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Can Cancer Education Programs Improve Health Literacy Among Deaf and Hard of Hearing Patients: a Systematic Review

Can Cancer Education Programs Improve Health Literacy Among Deaf and Hard of Hearing Patients: a... Patients affected from hearing loss face many problems when visiting oncologists. We conducted a systematic review to survey if cancer education programs can promote health literacy among deaf and hard of hearing (DHH) patients. The authors searched two databases for RCTs, and cohort studies with interventions promoting cancer health literacy for adult DHH patients. Risk of bias was assessed with SIGN Methodology Checklist for RCTs, and cohort studies. Significance of mean changes over time, and mean differences between comparison groups were used to present outcomes of each study. Surveyed interventions addressed three domains: cancer knowledge, coping skills, and cancer screening. Key information was gathered and synthesized providing a juxtaposition of the content and presenting important effects in detail. Nine RCTs and seven cohorts with 1865 participants were included. In total, 13 studies showed that cancer health literacy interventions improved mean scores significantly from pre- to post-test measures. There are hints that captioning and written texts may be sufficient for milder forms of hearing loss. Three studies showed that resiliency skill training promotes various domains of well-being. Three studies indicated that educational interventions encourage cancer screening practices. Educational programs are an effective way to promote cancer health literacy among DHH patients to facilitate communication with oncologists. As extent of hearing loss was not assessed, the authors cannot say the degree to which results are applicable to all degrees of hearing loss. To obtain hard data, further studies with more diverse populations, various cancer entities, different methods, and exact hearing loss assessments are required. Keywords Cancer · Health literacy · Education · Deaf · Hard of hearing · Communication Introduction loss [1]. Based on the above criteria, the prevalence of hearing loss among adults in Germany is 16.2%. Regarding Rationale demographic changes, it is expected to rise [2]. From a functional point of view, the DHH (deaf and hard While congenital hearing loss has mostly genetic reasons, of hearing) population is heterogeneous with unique com- various factors cause acquired hearing loss. The WHO refers munication needs. Deaf individuals are primarily visual pro- to hearing loss as hearing threshold of less than 25 dB. It cessors of information, preferring visual languages and sign is categorized into four grades: slight 26–40 dB, moderate language interpreters. Despite their reduced auditory input, 41–60 dB, severe 61–80 dB, and profound > 81 dB hearing hard of hearing individuals are primarily visual-auditory processors and rely on audition and speech. It is expect- able that the first group could benefit from a sign language * Jan Münstermann interpreter, while the second could benefit from captions jan.muenstermann@outlook.de integrated into videos. * Jutta Hübner DHH patients face many problems when interacting with jutta.huebner@med.uni-jena.de doctors [3–7]. These obstacles cause low satisfaction with Hämatologie Und Internistische Onkologie, Klinik Für healthcare [8] and have negative impact on patient-provider Innere Medizin II, Universitätsklinikum Jena, Am Klinikum communication [4, 9]. Although there is much advice on 1, 07747 Jena, Germany communication with DHH patients [10, 11], it can be dif- Klinik Für HNO-Erkrankungen, Kopf-Hals-Chirurgie, ficult to implement these recommendations. Südharz-Klinikum Nordhausen, Nordhausen, Germany Vol.:(0123456789) 1 3 4 Journal of Cancer Education (2023) 38:3–15 DHH patients struggle for health information access [12] records were screened for eligibility. If we could not retrieve to make health decisions [13]. Cancer-related health literacy full texts, a Google search was launched. interventions for deaf people could facilitate the accessibility of information resources. The findings base on scant studies Data Items for specific cancer types and are limited to target populations [14]. Low health literacy hampers effective communication We collected data for change in cancer health literacy. No additionally [15, 16]. Promotion of health literacy with tai- restrictions were imposed upon assessment methods. One lored programs and meeting could facilitate communication post-interventional assessment was sufficient for inclusion. [16, 17]. Regarding direct interactions, we found one sys- Data on samples and study designs were gathered. Reported tematic review on communication problems of hospitalized outcomes were summed up in key points. DHH patients with doctors. It showed that voice amplifiers are capable of facilitating communication [9]. We identified Study Risk of Bias Assessment low health literacy rates among the DHH population as a barrier to effective communication on cancer [15, 16]. Risk of bias was assessed with SIGN Methodology Check- lists (Version 2.0). The Oxford Centre for Evidence-Based Objectives Medicine: Catalogue of Bias [18] was employed to justify a downgrading in the domains of internal validity. Can cancer education programs promote health literacy among DHH patients? Eec ff t Measure We used mean changes in assessment methods to present Materials and Methods outcomes. In case of missing data, we summarized tenden- cies. A p-value of ≤ 0.05 was declared the threshold for sta- All decisions were unanimously made by the three authors. tistical significance. In case of disagreement, consensus was found by discussion. Synthesis Methods Eligibility Criteria Surveyed interventions address a variety of health literacy We used a PICO framework to define eligibility criteria programs. The concept of health literacy comprises under- (Supplementary Material 1). We included German and Eng- standing and using healthcare information [13]. Our struc- lish RCTs and cohort studies with interventions improving ture is derived from these aspects: (1) cancer knowledge, cancer health literacy among DHH patients, assessed by (2) coping skills, and (3) cancer screening. To provide an audiometry or self-report, age ≥ 18 years. Other DHH or overview, we created evidence tables comprising five items: hearing patients were accepted as comparisons. We surveyed intervention, control, assessment method, follow-up, and effects on cancer health literacy, satisfaction with healthcare, results. Syntheses of our results are structured in a sum- and satisfaction with QoL (Quality of life). mary text. Search Strategy Certainty Assessment On 19 September 2021, two medical databases — MED- We assessed certainty of evidence using Oxford Centre for LINE and EMBASE — were systematically searched. Our Evidence-Based Medicine: Levels of Evidence and rated search strategy consisted of terms for cancer on the one studies from levels 1 to 5 [19]. hand and hearing impairment, sign language, and education programs for the DHH population on the other hand. Sup- plementary Material 2 provides our search strings with all Results restrictions. Study Selection Selection Process Sixteen studies were included in the present review. Our Four steps were taken to select studies for the present sys- search strategy revealed 961 records in both databases. tematic review. After detecting doublets, all retrieved titles Checking for duplicates removed 6 hits. After scanning the were screened for relevance. In a third step, remaining titles and abstracts for relevance to this research, further 931 publications were excluded. The remaining 24 publications 1 3 Journal of Cancer Education (2023) 38:3–15 5 were checked for the prior defined PICO criteria, which lead statistical analysis. Three studies [27, 31, 32] had a drop-out to the rejection of eight further studies. Reasons for exclu- of 36%. It concentrated on the control group. Zazove et al. sion are shown in Table 1. The process is illustrated under [42] had a very high drop-out of 80%. Three studies [27, 31, Supplementary Material 3. 32] had small samples (< 100 participants). Individual study characteristics are listed in Table  2. All included cohorts had a high quality in general mini- Three studies [27, 31, 32] had the same 45 participants. Four mization of bias. All included studies had clearly focused studies [31, 32, 37, 42] included all kinds of hearing loss. questions, defined outcomes, comparable study groups, and Four studies had related interventions. Yao et al. [41] used reliable methods of assessment. All studies have low risk the Choe et al. [28] data of 127 deaf patients to compare of attrition bias with a drop-out of less than 20%. Included them to hearing women. Double patients were not consid- cohorts are affected by a volunteer bias as patients were ered in the total count. Sacks et al. [38] surveyed the efficacy chosen through flyers in deaf clubs and snowballing tech - of a health literacy program for hearing and deaf patients. niques. Hearing loss was assessed via self-report. Three Folkins et al. [30] surveyed the same program in compari- studies [30, 34, 36] assessed prognostic factors multiple son to a different prevention program. Participation in the times. Three studies [35, 38, 41] compared deaf to hearing prior study was an exclusion criterion. Each included study cohorts. Education levels were considered as a confounder. reports its own relevant data. Every study assessed hearing All cohorts provided confidence intervals and had an asso- loss via self-report. ciation between exposure and outcome. Supplementary Material 4 provides a table with an Risk of Bias in Studies Oxford Centre for Evidence-Based Medicine: Levels of Evidence [19] rating and a SIGN Methodology Checklists Five RCTs had a high quality and four an acceptable quality assessment of each included RCT and cohort. in general minimization of bias. All studies had randomized assignments, adequate concealment methods, comparable Results of Individual Studies treatments, and control groups at the beginning. The only group difference was treatment under investigation. Every The most common endpoint was the gain of cancer knowl- study used standard, valid, and reliable outcome meas- edge after being exposed to a cancer health literacy inter- urements. Cumberland et al. [29] did not provide clearly vention. Other outcomes were change in cancer screening focused questions. They emerge indirectly from the purpose behavior and benefits of coping skills. Some adverse events of the surveyed intervention. All RCTs struggled with an could also be observed. Acquired data are given in Table 3. adequate blinding. The authors were involved in the devel- opment, carrying out, and evaluation. All are affected by a Results of Syntheses volunteer bias. The participants were invited via flyers to join studies. Five studies [28, 29, 33, 37, 40] used snowball Cancer Knowledge sampling techniques. Every RCT identified education levels as a confounder. Hearing loss was assessed only via self- Six RCTs, and seven cohort studies surveyed the efficacy report. Three controls [28, 33, 40] were primarily inferior. of cancer health literacy interventions adapted to the needs Questionnaires referred to the content of the intervention of DHH patients. Included interventions were adapted while the controls were exposed to general cancer informa- through an ASL interpreter and captions. Kaskowitz et al. tion. Cumberland et al. [29] did not provide summarizing [36] did not provide any captions. Control interventions Table 1 Excluded studies Reference Reason for exclusion Berman et al., 2013 [20] Another study type: cross-sectional study Brooker et al., 2009 [21] Another study type: qualitative study Naseribooriabadi et al., 2018 [14] Another study type: systematic review Kushalnagar, Engelman et al., 2018 [22] Another study type: cross-sectional study Kushalnagar et al., 2020 [23] Another study type: cross-sectional study Peris-Celda et al., 2020 [24] Another study type: cross-sectional study Wang et al., 2010 [25] Another intervention: influence of internal health locus of control (IHLC) on cervical cancer knowledge Wollin and Elder, 2003 [26] Another study type: qualitative study 1 3 6 Journal of Cancer Education (2023) 38:3–15 Table 2 Characteristics of included studies Reference Participants (inter- ♀/♂ Drop-out (intervention Mean age (SD) Assessment of hearing Country vention [cross-over]/ [cross-over]/control) loss control) Carter et al., 2021 [27] 45 30/15 16 41,33 Self-reported deafness USA (24/21) (1/4) post-intervention (14,17) (1/10) follow-up Choe et al., 2009 [28] 130 130/0 12 41,23 Self-reported deafness USA (72[56]/58) (16,2) Cumberland et al., 2018 209 209/0 15 N/A Self-reported deafness USA [29] (90/92) (6/8) follow-up Folkins et al., 2005 [30] 102 0/102 7 44,35 Self-reported hearing USA follow-up (17,39) loss Funes et al., 2019 [31] 45 30/15 16 41,33 Self-reported hearing USA (24/21) (1/4) post-intervention (14,17) loss (1/10) follow-up Greenberg et al., 2019 45 30/15 16 41,33 Self-reported deafness USA [32] (24/21) (1/4) pst-intervention (14,17) (1/10) follow-up Harry et al., 2012 [33] 136 68/68 0[6] 37,56 Self-reported deafness USA (75[61]/61) (0[6] /0) follow-up (12,73) Hickey et al., 2013 [34] 122 122/0 7 45,32 Self-reported deafness USA follow-up (14,19) Jensen et al., 2013 [35] 107; 52 hearing 107/0 0 55,89 Self-reported deafness USA (9,28) Kaskowitz et al., 2006 121 0/121 7 40,38 Self-reported deafness USA [36] follow-up (13,91) Palmer et al., 2017 [37] 150 95/55 Total: 6 44,5 Self-reported hearing USA (2/0) pre-intervention (14,0) loss (3/1) post-intervention Sacks et al., 2013 [38] 175; 90 hearing 0/175 0 24,18 Self-reported deafness USA (4,48) Sadler et al., 2001 [39] 123 123/0 0 39,3 Self-reported deafness USA (14,8) Shabaik et al., 2010 [40] 144 N/A 13[18] N/A Self-reported deafness USA (86[50]/58) (5[18]/8) follow-up Yao et al., 2012 [41] 233; 106 hearing 233/0 0 38,97 Self-reported deafness USA (17,51) Zazove et al., 2012 [42] 195 117/78 156 55.1 Self-reported hearing USA (97/98) 90 first follow-up (16.6) loss 66 s follow-up Total 1865 1107/614 273 43 - - (13,8) were adapted through an ASL interpreter [28, 33, 40], cap- In case of 12 interventions, the participant’s mean scores tions [29, 37], and texts [42]. Surveyed programs focused improved significantly (p ≤ 0.05) from pre- to post-test and on generic as well as gender-specific cancers. Three stud- to later follow-ups. Cumberland et al. [29] could show that ies dealt with breast, two with cervical and two with its probands somehow improved but do not provide mean prostate/testicular cancer. Remaining studies comprised changes. Zazove et al. [42] had long follow-up periods of ovarian, prostate, colorectal, and skin cancer as well as 1 and 6 months, and Cumberland et al. [29] had an even cancer genetics and prevention. A total of 1422 DHH longer follow-up period of 12 months. Both are affected by patients (167 in cross-overs) were surveyed. 248 hearing high drop-out rates. patients served as comparisons. All studies assessed hear- Two control groups improved significantly. The Palmer ing loss via self-report and were carried out in the USA. et al. [37] control was exposed to the same content as the All cohorts and four RCTs had a high quality, two RCTs intervention but in a written form, not a video in ASL with an acceptable quality. captioning. Taking education levels into consideration 1 3 Journal of Cancer Education (2023) 38:3–15 7 1 3 Table 3 Results of individual studies Intervention Control Assessment methods Follow-up Results Carter et al., 2021 [27] d3RP-NF2 (Relaxation, dHEP-NF2 (Health Enhance- PHQ-9 (Patient Health Ques- Baseline Intervention: Response, and Resiliency ment Program for neurofi- tionnaire-9) for depression Post-intervention (within Significant reductions in depres- Program for deaf neurofi- bromatosis type II patients) symptom severity 1 week after) sive symptoms (p ≤ 0.05) and bromatosis type II patients) with information about PSS-10 (Perceived Stress 6 months perceived stress (p ≤ 0.001). with information about health topics delivered Scale 10) for perceived Depressive symptoms health topics, and resiliency through videoconferencing stress during the previous remained below MCID skill training delivered month (minimal clinically impor- through videoconferencing tant difference) of 5 points (MCID = 5) Improvements were sustained at follow-up (p > 0.1). Depres- sive symptoms exceeded the MCID of 5 points (MCID = 5.84) Control: No significant improvement in any score at post-test or follow-up Choe et al., 2009 [28] Educational video “Cervical National Cancer Institute’s 8 questions on cancer in Baseline Intervention: Cancer: Catch It Early, and PowerPoint presentation general, and 5 on cervical Post-intervention Significant improvement at Save Your Life” in ASL with “The Basics” in ASL about cancer 2 months post-test, and follow-up open captioning cancer in general (p ≤ 0.05) Control: No significant improvement Adverse events: Deterioration for one question at post-test (most frequent type of women’s cancer; switch from breast cancer to cervical cancer) 8 Journal of Cancer Education (2023) 38:3–15 1 3 Table 3 (continued) Intervention Control Assessment methods Follow-up Results Cumberland et al., 2018 [29] Educational video about PowerPoint presentation, 5 questions on cancer in gen- Baseline Only relative changes for sig- breast cancer in ASL with documents, and group eral, and 4 on breast cancer Post-intervention nificantly changed questions captioning discussions about general 12 months (p ≤ 0.05) health topics Intervention improved in one more question at post-test, and two more questions at follow- up than control arm Cancer screening: Significant increase in mam- mography screening, and clinical breast examination at follow-up (p ≤ 0.0001) Adverse events: Significant deteriorations for two questions at post-test (correct answers: negations; p = 0.016; p = 0.007) Folkins et al., 2005 [30] Educational video “Prostate, –- 11 questions on cancer in Baseline Cohort: and Testicular Cancer: Know general, 7 on testicular, and Post-intervention Significant improvement at your Options” in ASL with 7 on prostate cancer 2 months post-test, and follow-up open captioning (p ≤ 0.05) Funes et al., 2019 [31] d3RP-NF2 dHEP-NF2 WHOQOL-BREF (World Baseline Intervention: Health Organization Qual- Post-intervention (within Significant improvement in ity of Life Abbreviated 1 week after) physical QoL (p ≤ 0.001), psy- Instrument) for physical, 6 months chological QoL (p ≤ 0.001), psychological, social, and social (p = 0.001), and envi- environmental quality of life ronmental QoL (p < 0.001) at (QoL) post-test No significant changes from post-test to follow-up Control: No significant improvement in any domain at post-test Non-significant deterioration for social QoL (p = 0.02), no significant changes in other domains at follow-up Journal of Cancer Education (2023) 38:3–15 9 1 3 Table 3 (continued) Intervention Control Assessment methods Follow-up Results Greenberg et al., 2019 [32] d3RP-NF2 dHEP-NF2 MOCS-A (Measure of Current Baseline Intervention: Status-A) for coping abilities Post-intervention (within Significant improvement in MOS (Medical Outcomes 1 week after) mindfulness (p = 0.008), Study Social Support Sur- 6 months coping (p < 0.001), social vey) for social support support (p < 0.001), gratitude CAMS-R (Cognitive, and (p = 0.002), and a non- Affective Mindfulness significant trend f or optimism Scale-Revised) for mindful- (p = 0.079) at post-test, main- ness tained at follow-up (p = 0.87) GQ-6 (Gratitude Question- Control: naire) for gratitude No significant improvement in any score at post-test or LOT-R (Life Orientation Test- follow-up Revised) for optimism Harry et al., 2012 [33] Educational video “Be Smart, Video “Cancer Patients, and 40 questions related to the Baseline Intervention: Beat Skin Cancer” in ASL Family Support” in ASL content of intervention video Post-intervention Significant improvement at with open captioning post-test (p ≤ 0.001) Control: No significant improvement Hickey et al., 2013 [34] Educational video about breast –- 10 questions on breast cancer Baseline Cohort: Significant improve- cancer in ASL with open Post-intervention ment at post-test, and follow- captioning 2 months up (p ≤ 0.01) Correlation between self- assessed, and actual breast cancer knowledge (r = 0.271; p = 0.003) Associations for breast cancer knowledge with screening (p = 0.005), and mammogram (p = 0.07) practices as well as education (p < 0.001) Jensen et al., 2013 [35] Educational video “Finding, –- 29 questions on general, and Baseline Cohort: and Surviving Ovarian Can- ovarian cancer Post-intervention Significant improvement at cer” in ASL, and English post-test (p ≤ 0.001) captioning Comparison with hearing patients: Hearing have significantly higher baseline knowledge (p < 0.001), and mean increase at post-test (p < 0.001) Deaf have significantly higher cancer knowledge at post-test compared to hearing pre-test (p = 0.021) 10 Journal of Cancer Education (2023) 38:3–15 1 3 Table 3 (continued) Intervention Control Assessment methods Follow-up Results Kaskowitz et al., 2006 [36] Educational PowerPoint –- 21 questions related to the Baseline Cohort: presentation about prostate presentation about prostate Post-intervention Significant improvement at cancer in ASL cancer 2 months post-test, and follow-up (p ≤ 0.05) Trend upwards from post-test to follow-up Cancer screening: Non-significant increase in prostate specific antigen, and rectal exam screenings at follow-up (age 50 +) Adverse events: Deterioration for one question at post-test (“Cancer is a dis- ease that usually passes from parents to children.”, correct answer: negation) Palmer et al., 2017 [37] Video about cancer genetics English text about cancer 17 questions on cancer Baseline (within 2 weeks Intervention/control: information in ASL with genetics information, same genetics, and 8 on genetic before) Significant improvement at English closed captioning content counseling Post-intervention (within post-test (p < 0.001) 2 weeks after) High education significant improvement (p < 0.001) Control: Low education no significant improvement (p = 0.79) Intervention: Low education significant improvement (p < 0.001) Cancer screening: Significantly more interven- tion participants feel “very confident” about develop- ing a family tree to identify inherited cancer risk factors (p = 0.005) Journal of Cancer Education (2023) 38:3–15 11 1 3 Table 3 (continued) Intervention Control Assessment methods Follow-up Results Sacks et al., 2013 [38] Educational video “Prostate, –- 4 questions on general cancer Baseline Cohort: and Testicular Cancer: Know knowledge, and 21 on tes- Post-intervention Significant improvement at your Options” in ASL, and ticular cancer knowledge post-test (p < 0.001) English captioning Comparison with hearing patients: Hearing have significantly higher baseline knowledge (p < 0.001), and mean increase at post-test (p < 0.001) Deaf have significantly higher cancer knowledge at post-test compared to hearing pre-test (p < 0.001) Sadler et al., 2001 [39] Breast cancer education –- 7 questions on breast cancer Baseline Cohort: session in ASL with open Post-intervention Significant improvement for 5 captioning answers at post-test (p ≤ 0.05) Shabaik et al., 2010 [40] Educational video “Colorectal National Cancer Institute’s 7 questions on cancer in Baseline Intervention: Cancer: Take Action!” in PowerPoint presentation general, and 13 on colorectal Post-intervention Significant improvement at ASL with open captioning “The Basics” in ASL about cancer 2 months post-test (p ≤ 0.05) cancer in general Cross-over group had signifi- cantly greater improvement at follow-up than original group in CRC knowledge (p ≤ 0.05) Control: No significant improvement Yao et al., 2012 [41] Educational video “Cervical –- 7 questions on cancer in Baseline Cohort: Cancer: Catch It Early, and general, and 5 on cervical Post-intervention Significant improvement at Save Your Life” in ASL with cancer post-test (p < 0.001) English captioning Comparison with hearing patients: Hearing have significantly higher baseline knowledge (p < 0.001) Deaf have significantly higher mean increase at post-test (p < 0.001) Zazove et al., 2012 [42] Educational video about can- Video with same content in 12 questions related to the Baseline Intervention/control: cer prevention in ASL with spoken English with cap- content of the video Post-intervention Significant improvement at captioning tions 1 month post-test (p < 0.001), and first 6 months follow-up (p ≤ 0.01), and sec- ond follow-up (p ≤ 0.05) 12 Journal of Cancer Education (2023) 38:3–15 revealed that only the high education group reached com- Centre for Evidence-Based Medicine: Levels of Evidence parable results. The low education group improved under scale. Cumberland et al. [29] was downrated to level 2 — intervention conditions only. The Zazove et al. [42] control due to imprecision of its question and missing statistical was exposed to the same video as the intervention without analysis. an ASL interpreter, but with captions. They showed that both groups improved equally signic fi antly from baseline to post- test and could retain their knowledge at both follow-ups. Three control arms [28, 33, 40] did not show any significant Discussion improvement. In these cases, questionnaires were designed for the intervention. Three cohort studies included hearing Interpretation individuals [35, 38, 41]. In all cases, the hearing cohort had a significantly higher baseline knowledge. Yao et al. [41] Inadequate health literacy is one common characteristic of could show higher knowledge increase for the DHH cohort. DHH patients. Tailored health literacy programs are one In both other studies [35, 38], the hearing cohort had higher way to meet their individual health needs [15, 16]. Existing increase. Still, the DHH post-test scores exceeded hearing data focus on deaf patients and programs including an ASL pre-test scores. interpreter. As the DHH population has heterogenous com- In three studies [28, 29, 36], deteriorations for some munication needs, strengths, and preferences, it is necessary knowledge questions could be observed post-interventional. to develop further formats that are adapted to the needs of These effects seem to be caused by confusion and do not hard of hearing people who depend on auditory input. As affect the overall efficacy of the interventions. this target group consists of mainly older individuals with higher incidences of malignant diseases, existing programs Cancer Screening could be modified towards their needs. Our results match closely with previous studies [14]. Edu- Three studies with 480 participants surveyed post-interven- cational programs adapted to the needs of the deaf are an tional cancer screening behavior. Two of these studies had a effective way to promote cancer health literacy [16]. The high [36, 37], and one an acceptable quality [29]. All studies limited number of included cancer entities, interventional assessed hearing loss via self-reported and were carried out studies, and small population within the American Deaf in the USA. Cumberland et al. [29] had the longest follow- community indicate insufficient evidence. up of 12 months and reported a significant post-interven- Although most interventions used ASL interpreters to tional increase in screening behavior for both groups after convey information, appropriate English captioning could be 12 months [29]. Kaskowitz et al. [36] found hints at more sufficient [42]. One study [37 ] considered education levels prostate specific antigen and digital rectal exam screenings in the analysis of their results. The distribution of educa- for deaf men older than 50 years after 2 months [36]. Palmer tion levels between both groups was equal but there are no et al. [37] detected a significant increase in confidence about data on correlation between education levels and degree of developing a family tree to identify inherited cancer risk fac- hearing loss. The control read a text instead of watching a tors. Actual behavior was not assessed [37]. video and comprised more hard of hearing individuals than the intervention: 12% and 4%. A reasonable explanation Coping Skills for these findings could be that the high education group tended to include persons with lesser degrees of hearing Three studies [27, 31, 32] report by an example of the same loss and therefore relied on texts. This implies that persons 45 NF-2 patients that adding resiliency skill training to more skilled in using written language would benefit pri- health literacy educational programs reduces depressive marily from texts or captions, while predominantly visual symptoms (p ≤ 0.01) as well as perceived stress (p ≤ 0.001) processors of information would benefit primarily from ASL and improves quality of life (p ≤ 0.001) as well as some interpreters. Responding to the heterogeneous communica- aspects of resiliency (p ≤ 0.01) significantly af ter interven- tion preferences of DHH persons (text respectively caption- tion. The improvements maintain significant after 6 months. ing and ASL interpreting) is essential for full accessibility. The results are affected by a small sample bias, and a high Adding clear speech to existing programs could be an easy drop-out, and therefore have an acceptable quality. step to meet further individual needs. However, hearing individuals had higher increases in Certainty of Evidence cancer knowledge in deaf-tailored programs [35, 38, 41]. An explanation may be that deaf audiences find it hard to According to its research designs, nine included RCTs were adopt health information with unfamiliar words and complex rated level 2 and seven cohort studies level 3 on the Oxford grammar [43]. 1 3 Journal of Cancer Education (2023) 38:3–15 13 We also identified publications with a new approach. studies, but we wanted to ground our implications on high Interventions addressing coping mechanisms for neurofi- certainty of evidence and to know in which extent these bromatosis type II associated hearing loss provide hints for data are available. Previous reviews including low certainty their efficacy. They are affected by attrition bias as well as data [9] were able to present more eligible studies but found very small sample sizes and target at a specific population mainly surveys as well as interviews, and only two interven- [27, 31, 32]. Although affected patients seem to profit from tions. We searched two common databases and restricted our this different approach, it is rather unlikely that it influences results to English and German. Despite these methodologi- communication between oncologists and their patients. cal limitations, we are confident to present sound results. Aside from health literacy, we also paid attention to can- cer screening rates, a meaningful parameter for the ee ff ctive - Implications ness of educational interventions. They depict persistence, actual use, and benefit of cancer health education. Three We can state that accessible education programs are an studies could show an increase in screening rates [29, 36, effective way to promote cancer health literacy among deaf 37]. More data are desirable. patients and can therefore have a beneficial influence on oncologist-patient communication. Still, we cannot say the Limitations of Evidence degree to which the effect is dependent on communication preferences and grade of hearing loss. Present data do not All interventions were carried out in the USA and comprise include audiometric assessments. Surveyed interventions only seven cancer-related topics. Although not all findings mostly used ASL interpreters to convey information. It is obtained in this context might be applicable to different conceivable that especially milder forms of hearing loss countries, general principles of health education remain the would profit from texts or adequate captioning as it meets same and can be adapted in other countries and on differ - their preferred communication mode. Hence, it must be sur- ent topics. Nevertheless, studies including more participants veyed if given approaches are equally effective for all kinds and addressing further topics are desirable. Included inter- of hearing loss, and if existing methods could be modified. ventions concentrated primary on deaf patients. No data Further studies with more diverse populations, various can- were given on the reason and extent of hearing loss as it cer entities, different methods, and exact hearing loss assess- was measured through self-report. We do not either know, if ments are required. participants were allowed to use hearing-aids. We cannot say Plenty of advice for physicians on how to interact with the degree to which results are applicable to milder forms of DHH patients contrasts with only rudimentary evaluated hearing loss. All included studies are affected by a selection measures of physician–patient communication. To verify bias due to their sampling techniques and a volunteer bias. these recommendations and to explore most beneficial com- They lead to high baseline scores as participants originate munication strategies for DHH patients, further research is from a medically interested population. Apart from Cumber- strongly recommended. land et al. [29], included studies present complete statistical data. Only three studies surveyed screening rates and one had a long follow-up of 12 months. As it is a long-term Author Contribution All authors contributed equally to this work. parameter surveys presupposes sufficiently long follow-up Funding Open Access funding enabled and organized by Projekt periods. Longer follow-ups may have led to higher screen- DEAL. ing rates. We could not find any data on direct communication strat- Declarations egies for oncologists. A reason for this may be that meas- ures of physician–patient communication reveal mainly poor Conflict of Interest The authors declare no conflicts of interests. internal consistency and content validity [44]. A related review on “Impact of Hearing Loss on Patient–Provider Open Access This article is licensed under a Creative Commons Attri- Communication Among Hospitalized Patients” demon- bution 4.0 International License, which permits use, sharing, adapta- tion, distribution and reproduction in any medium or format, as long strated adverse effects of hearing loss on patient–provider as you give appropriate credit to the original author(s) and the source, communication and found out that simple bedside interven- provide a link to the Creative Commons licence, and indicate if changes tions such as voice amplifiers improved communication [ 9]. were made. The images or other third party material in this article are included in the article's Creative Commons licence, unless indicated otherwise in a credit line to the material. If material is not included in Limitations of the Review Process the article's Creative Commons licence and your intended use is not permitted by statutory regulation or exceeds the permitted use, you will We excluded all studies with Levels of Evidence [19] below need to obtain permission directly from the copyright holder. To view a level 3. This might have led to a smaller selection of eligible copy of this licence, visit http://cr eativ ecommons. or g/licen ses/ b y/4.0/ . 1 3 14 Journal of Cancer Education (2023) 38:3–15 20. Berman BA et al (2013) Breast cancer knowledge and practices References among D/deaf women. Disabil Health J 6(4):303–316. https://doi. org/ 10. 1016/j. dhjo. 2013. 05. 001 1. Olusanya BO, Davis AC, Hoffman HJ (2019) Hearing loss grades 21. Brooker J et al (2009) A qualitative exploration of quality of life and the international classification of functioning, disability and among individuals diagnosed with an acoustic neuroma. Br J health. 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OCEBM Levels of Evidence Working Group (2011) The Oxford ics education for Deaf American Sign Language users produces levels of evidence 2. Oxford Centre for Evidence-Based Medicine. greater knowledge and confidence than English text only: a ran- https://www .cebm. o x.ac. uk/ r esour ces/le vels-of- e vidence/ ocebm- domized study. Disabil Health J 10(1):23–32. https:// doi. org/ 10. levels- of- evide nce Accessed 24 January 2022 1016/j. dhjo. 2016. 07. 002 1 3 Journal of Cancer Education (2023) 38:3–15 15 38. Sacks L et al (2013) Testicular cancer knowledge among deaf and 43. Kushalnagar P et  al (2018) Making cancer health text on the hearing men. J Cancer Educ 28(3):503–508. https:// doi. org/ 10. internet easier to read for deaf people who use American sign 1007/ s13187- 013- 0493-x language. J Cancer Educ 33(1):134–140. https://doi. or g/10. 1007/ 39. Sadler GR et al (2001) Bringing breast cancer education to deaf s13187- 016- 1059-5 women. 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J Cancer Educ 27(2):327–337. https:// doi. or g/ 10. 1007/ s13187- 011- 0292-1 1 3 http://www.deepdyve.com/assets/images/DeepDyve-Logo-lg.png Journal of Cancer Education Springer Journals

Can Cancer Education Programs Improve Health Literacy Among Deaf and Hard of Hearing Patients: a Systematic Review

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Springer Journals
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Copyright © The Author(s) 2022
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0885-8195
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1543-0154
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10.1007/s13187-022-02222-3
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Abstract

Patients affected from hearing loss face many problems when visiting oncologists. We conducted a systematic review to survey if cancer education programs can promote health literacy among deaf and hard of hearing (DHH) patients. The authors searched two databases for RCTs, and cohort studies with interventions promoting cancer health literacy for adult DHH patients. Risk of bias was assessed with SIGN Methodology Checklist for RCTs, and cohort studies. Significance of mean changes over time, and mean differences between comparison groups were used to present outcomes of each study. Surveyed interventions addressed three domains: cancer knowledge, coping skills, and cancer screening. Key information was gathered and synthesized providing a juxtaposition of the content and presenting important effects in detail. Nine RCTs and seven cohorts with 1865 participants were included. In total, 13 studies showed that cancer health literacy interventions improved mean scores significantly from pre- to post-test measures. There are hints that captioning and written texts may be sufficient for milder forms of hearing loss. Three studies showed that resiliency skill training promotes various domains of well-being. Three studies indicated that educational interventions encourage cancer screening practices. Educational programs are an effective way to promote cancer health literacy among DHH patients to facilitate communication with oncologists. As extent of hearing loss was not assessed, the authors cannot say the degree to which results are applicable to all degrees of hearing loss. To obtain hard data, further studies with more diverse populations, various cancer entities, different methods, and exact hearing loss assessments are required. Keywords Cancer · Health literacy · Education · Deaf · Hard of hearing · Communication Introduction loss [1]. Based on the above criteria, the prevalence of hearing loss among adults in Germany is 16.2%. Regarding Rationale demographic changes, it is expected to rise [2]. From a functional point of view, the DHH (deaf and hard While congenital hearing loss has mostly genetic reasons, of hearing) population is heterogeneous with unique com- various factors cause acquired hearing loss. The WHO refers munication needs. Deaf individuals are primarily visual pro- to hearing loss as hearing threshold of less than 25 dB. It cessors of information, preferring visual languages and sign is categorized into four grades: slight 26–40 dB, moderate language interpreters. Despite their reduced auditory input, 41–60 dB, severe 61–80 dB, and profound > 81 dB hearing hard of hearing individuals are primarily visual-auditory processors and rely on audition and speech. It is expect- able that the first group could benefit from a sign language * Jan Münstermann interpreter, while the second could benefit from captions jan.muenstermann@outlook.de integrated into videos. * Jutta Hübner DHH patients face many problems when interacting with jutta.huebner@med.uni-jena.de doctors [3–7]. These obstacles cause low satisfaction with Hämatologie Und Internistische Onkologie, Klinik Für healthcare [8] and have negative impact on patient-provider Innere Medizin II, Universitätsklinikum Jena, Am Klinikum communication [4, 9]. Although there is much advice on 1, 07747 Jena, Germany communication with DHH patients [10, 11], it can be dif- Klinik Für HNO-Erkrankungen, Kopf-Hals-Chirurgie, ficult to implement these recommendations. Südharz-Klinikum Nordhausen, Nordhausen, Germany Vol.:(0123456789) 1 3 4 Journal of Cancer Education (2023) 38:3–15 DHH patients struggle for health information access [12] records were screened for eligibility. If we could not retrieve to make health decisions [13]. Cancer-related health literacy full texts, a Google search was launched. interventions for deaf people could facilitate the accessibility of information resources. The findings base on scant studies Data Items for specific cancer types and are limited to target populations [14]. Low health literacy hampers effective communication We collected data for change in cancer health literacy. No additionally [15, 16]. Promotion of health literacy with tai- restrictions were imposed upon assessment methods. One lored programs and meeting could facilitate communication post-interventional assessment was sufficient for inclusion. [16, 17]. Regarding direct interactions, we found one sys- Data on samples and study designs were gathered. Reported tematic review on communication problems of hospitalized outcomes were summed up in key points. DHH patients with doctors. It showed that voice amplifiers are capable of facilitating communication [9]. We identified Study Risk of Bias Assessment low health literacy rates among the DHH population as a barrier to effective communication on cancer [15, 16]. Risk of bias was assessed with SIGN Methodology Check- lists (Version 2.0). The Oxford Centre for Evidence-Based Objectives Medicine: Catalogue of Bias [18] was employed to justify a downgrading in the domains of internal validity. Can cancer education programs promote health literacy among DHH patients? Eec ff t Measure We used mean changes in assessment methods to present Materials and Methods outcomes. In case of missing data, we summarized tenden- cies. A p-value of ≤ 0.05 was declared the threshold for sta- All decisions were unanimously made by the three authors. tistical significance. In case of disagreement, consensus was found by discussion. Synthesis Methods Eligibility Criteria Surveyed interventions address a variety of health literacy We used a PICO framework to define eligibility criteria programs. The concept of health literacy comprises under- (Supplementary Material 1). We included German and Eng- standing and using healthcare information [13]. Our struc- lish RCTs and cohort studies with interventions improving ture is derived from these aspects: (1) cancer knowledge, cancer health literacy among DHH patients, assessed by (2) coping skills, and (3) cancer screening. To provide an audiometry or self-report, age ≥ 18 years. Other DHH or overview, we created evidence tables comprising five items: hearing patients were accepted as comparisons. We surveyed intervention, control, assessment method, follow-up, and effects on cancer health literacy, satisfaction with healthcare, results. Syntheses of our results are structured in a sum- and satisfaction with QoL (Quality of life). mary text. Search Strategy Certainty Assessment On 19 September 2021, two medical databases — MED- We assessed certainty of evidence using Oxford Centre for LINE and EMBASE — were systematically searched. Our Evidence-Based Medicine: Levels of Evidence and rated search strategy consisted of terms for cancer on the one studies from levels 1 to 5 [19]. hand and hearing impairment, sign language, and education programs for the DHH population on the other hand. Sup- plementary Material 2 provides our search strings with all Results restrictions. Study Selection Selection Process Sixteen studies were included in the present review. Our Four steps were taken to select studies for the present sys- search strategy revealed 961 records in both databases. tematic review. After detecting doublets, all retrieved titles Checking for duplicates removed 6 hits. After scanning the were screened for relevance. In a third step, remaining titles and abstracts for relevance to this research, further 931 publications were excluded. The remaining 24 publications 1 3 Journal of Cancer Education (2023) 38:3–15 5 were checked for the prior defined PICO criteria, which lead statistical analysis. Three studies [27, 31, 32] had a drop-out to the rejection of eight further studies. Reasons for exclu- of 36%. It concentrated on the control group. Zazove et al. sion are shown in Table 1. The process is illustrated under [42] had a very high drop-out of 80%. Three studies [27, 31, Supplementary Material 3. 32] had small samples (< 100 participants). Individual study characteristics are listed in Table  2. All included cohorts had a high quality in general mini- Three studies [27, 31, 32] had the same 45 participants. Four mization of bias. All included studies had clearly focused studies [31, 32, 37, 42] included all kinds of hearing loss. questions, defined outcomes, comparable study groups, and Four studies had related interventions. Yao et al. [41] used reliable methods of assessment. All studies have low risk the Choe et al. [28] data of 127 deaf patients to compare of attrition bias with a drop-out of less than 20%. Included them to hearing women. Double patients were not consid- cohorts are affected by a volunteer bias as patients were ered in the total count. Sacks et al. [38] surveyed the efficacy chosen through flyers in deaf clubs and snowballing tech - of a health literacy program for hearing and deaf patients. niques. Hearing loss was assessed via self-report. Three Folkins et al. [30] surveyed the same program in compari- studies [30, 34, 36] assessed prognostic factors multiple son to a different prevention program. Participation in the times. Three studies [35, 38, 41] compared deaf to hearing prior study was an exclusion criterion. Each included study cohorts. Education levels were considered as a confounder. reports its own relevant data. Every study assessed hearing All cohorts provided confidence intervals and had an asso- loss via self-report. ciation between exposure and outcome. Supplementary Material 4 provides a table with an Risk of Bias in Studies Oxford Centre for Evidence-Based Medicine: Levels of Evidence [19] rating and a SIGN Methodology Checklists Five RCTs had a high quality and four an acceptable quality assessment of each included RCT and cohort. in general minimization of bias. All studies had randomized assignments, adequate concealment methods, comparable Results of Individual Studies treatments, and control groups at the beginning. The only group difference was treatment under investigation. Every The most common endpoint was the gain of cancer knowl- study used standard, valid, and reliable outcome meas- edge after being exposed to a cancer health literacy inter- urements. Cumberland et al. [29] did not provide clearly vention. Other outcomes were change in cancer screening focused questions. They emerge indirectly from the purpose behavior and benefits of coping skills. Some adverse events of the surveyed intervention. All RCTs struggled with an could also be observed. Acquired data are given in Table 3. adequate blinding. The authors were involved in the devel- opment, carrying out, and evaluation. All are affected by a Results of Syntheses volunteer bias. The participants were invited via flyers to join studies. Five studies [28, 29, 33, 37, 40] used snowball Cancer Knowledge sampling techniques. Every RCT identified education levels as a confounder. Hearing loss was assessed only via self- Six RCTs, and seven cohort studies surveyed the efficacy report. Three controls [28, 33, 40] were primarily inferior. of cancer health literacy interventions adapted to the needs Questionnaires referred to the content of the intervention of DHH patients. Included interventions were adapted while the controls were exposed to general cancer informa- through an ASL interpreter and captions. Kaskowitz et al. tion. Cumberland et al. [29] did not provide summarizing [36] did not provide any captions. Control interventions Table 1 Excluded studies Reference Reason for exclusion Berman et al., 2013 [20] Another study type: cross-sectional study Brooker et al., 2009 [21] Another study type: qualitative study Naseribooriabadi et al., 2018 [14] Another study type: systematic review Kushalnagar, Engelman et al., 2018 [22] Another study type: cross-sectional study Kushalnagar et al., 2020 [23] Another study type: cross-sectional study Peris-Celda et al., 2020 [24] Another study type: cross-sectional study Wang et al., 2010 [25] Another intervention: influence of internal health locus of control (IHLC) on cervical cancer knowledge Wollin and Elder, 2003 [26] Another study type: qualitative study 1 3 6 Journal of Cancer Education (2023) 38:3–15 Table 2 Characteristics of included studies Reference Participants (inter- ♀/♂ Drop-out (intervention Mean age (SD) Assessment of hearing Country vention [cross-over]/ [cross-over]/control) loss control) Carter et al., 2021 [27] 45 30/15 16 41,33 Self-reported deafness USA (24/21) (1/4) post-intervention (14,17) (1/10) follow-up Choe et al., 2009 [28] 130 130/0 12 41,23 Self-reported deafness USA (72[56]/58) (16,2) Cumberland et al., 2018 209 209/0 15 N/A Self-reported deafness USA [29] (90/92) (6/8) follow-up Folkins et al., 2005 [30] 102 0/102 7 44,35 Self-reported hearing USA follow-up (17,39) loss Funes et al., 2019 [31] 45 30/15 16 41,33 Self-reported hearing USA (24/21) (1/4) post-intervention (14,17) loss (1/10) follow-up Greenberg et al., 2019 45 30/15 16 41,33 Self-reported deafness USA [32] (24/21) (1/4) pst-intervention (14,17) (1/10) follow-up Harry et al., 2012 [33] 136 68/68 0[6] 37,56 Self-reported deafness USA (75[61]/61) (0[6] /0) follow-up (12,73) Hickey et al., 2013 [34] 122 122/0 7 45,32 Self-reported deafness USA follow-up (14,19) Jensen et al., 2013 [35] 107; 52 hearing 107/0 0 55,89 Self-reported deafness USA (9,28) Kaskowitz et al., 2006 121 0/121 7 40,38 Self-reported deafness USA [36] follow-up (13,91) Palmer et al., 2017 [37] 150 95/55 Total: 6 44,5 Self-reported hearing USA (2/0) pre-intervention (14,0) loss (3/1) post-intervention Sacks et al., 2013 [38] 175; 90 hearing 0/175 0 24,18 Self-reported deafness USA (4,48) Sadler et al., 2001 [39] 123 123/0 0 39,3 Self-reported deafness USA (14,8) Shabaik et al., 2010 [40] 144 N/A 13[18] N/A Self-reported deafness USA (86[50]/58) (5[18]/8) follow-up Yao et al., 2012 [41] 233; 106 hearing 233/0 0 38,97 Self-reported deafness USA (17,51) Zazove et al., 2012 [42] 195 117/78 156 55.1 Self-reported hearing USA (97/98) 90 first follow-up (16.6) loss 66 s follow-up Total 1865 1107/614 273 43 - - (13,8) were adapted through an ASL interpreter [28, 33, 40], cap- In case of 12 interventions, the participant’s mean scores tions [29, 37], and texts [42]. Surveyed programs focused improved significantly (p ≤ 0.05) from pre- to post-test and on generic as well as gender-specific cancers. Three stud- to later follow-ups. Cumberland et al. [29] could show that ies dealt with breast, two with cervical and two with its probands somehow improved but do not provide mean prostate/testicular cancer. Remaining studies comprised changes. Zazove et al. [42] had long follow-up periods of ovarian, prostate, colorectal, and skin cancer as well as 1 and 6 months, and Cumberland et al. [29] had an even cancer genetics and prevention. A total of 1422 DHH longer follow-up period of 12 months. Both are affected by patients (167 in cross-overs) were surveyed. 248 hearing high drop-out rates. patients served as comparisons. All studies assessed hear- Two control groups improved significantly. The Palmer ing loss via self-report and were carried out in the USA. et al. [37] control was exposed to the same content as the All cohorts and four RCTs had a high quality, two RCTs intervention but in a written form, not a video in ASL with an acceptable quality. captioning. Taking education levels into consideration 1 3 Journal of Cancer Education (2023) 38:3–15 7 1 3 Table 3 Results of individual studies Intervention Control Assessment methods Follow-up Results Carter et al., 2021 [27] d3RP-NF2 (Relaxation, dHEP-NF2 (Health Enhance- PHQ-9 (Patient Health Ques- Baseline Intervention: Response, and Resiliency ment Program for neurofi- tionnaire-9) for depression Post-intervention (within Significant reductions in depres- Program for deaf neurofi- bromatosis type II patients) symptom severity 1 week after) sive symptoms (p ≤ 0.05) and bromatosis type II patients) with information about PSS-10 (Perceived Stress 6 months perceived stress (p ≤ 0.001). with information about health topics delivered Scale 10) for perceived Depressive symptoms health topics, and resiliency through videoconferencing stress during the previous remained below MCID skill training delivered month (minimal clinically impor- through videoconferencing tant difference) of 5 points (MCID = 5) Improvements were sustained at follow-up (p > 0.1). Depres- sive symptoms exceeded the MCID of 5 points (MCID = 5.84) Control: No significant improvement in any score at post-test or follow-up Choe et al., 2009 [28] Educational video “Cervical National Cancer Institute’s 8 questions on cancer in Baseline Intervention: Cancer: Catch It Early, and PowerPoint presentation general, and 5 on cervical Post-intervention Significant improvement at Save Your Life” in ASL with “The Basics” in ASL about cancer 2 months post-test, and follow-up open captioning cancer in general (p ≤ 0.05) Control: No significant improvement Adverse events: Deterioration for one question at post-test (most frequent type of women’s cancer; switch from breast cancer to cervical cancer) 8 Journal of Cancer Education (2023) 38:3–15 1 3 Table 3 (continued) Intervention Control Assessment methods Follow-up Results Cumberland et al., 2018 [29] Educational video about PowerPoint presentation, 5 questions on cancer in gen- Baseline Only relative changes for sig- breast cancer in ASL with documents, and group eral, and 4 on breast cancer Post-intervention nificantly changed questions captioning discussions about general 12 months (p ≤ 0.05) health topics Intervention improved in one more question at post-test, and two more questions at follow- up than control arm Cancer screening: Significant increase in mam- mography screening, and clinical breast examination at follow-up (p ≤ 0.0001) Adverse events: Significant deteriorations for two questions at post-test (correct answers: negations; p = 0.016; p = 0.007) Folkins et al., 2005 [30] Educational video “Prostate, –- 11 questions on cancer in Baseline Cohort: and Testicular Cancer: Know general, 7 on testicular, and Post-intervention Significant improvement at your Options” in ASL with 7 on prostate cancer 2 months post-test, and follow-up open captioning (p ≤ 0.05) Funes et al., 2019 [31] d3RP-NF2 dHEP-NF2 WHOQOL-BREF (World Baseline Intervention: Health Organization Qual- Post-intervention (within Significant improvement in ity of Life Abbreviated 1 week after) physical QoL (p ≤ 0.001), psy- Instrument) for physical, 6 months chological QoL (p ≤ 0.001), psychological, social, and social (p = 0.001), and envi- environmental quality of life ronmental QoL (p < 0.001) at (QoL) post-test No significant changes from post-test to follow-up Control: No significant improvement in any domain at post-test Non-significant deterioration for social QoL (p = 0.02), no significant changes in other domains at follow-up Journal of Cancer Education (2023) 38:3–15 9 1 3 Table 3 (continued) Intervention Control Assessment methods Follow-up Results Greenberg et al., 2019 [32] d3RP-NF2 dHEP-NF2 MOCS-A (Measure of Current Baseline Intervention: Status-A) for coping abilities Post-intervention (within Significant improvement in MOS (Medical Outcomes 1 week after) mindfulness (p = 0.008), Study Social Support Sur- 6 months coping (p < 0.001), social vey) for social support support (p < 0.001), gratitude CAMS-R (Cognitive, and (p = 0.002), and a non- Affective Mindfulness significant trend f or optimism Scale-Revised) for mindful- (p = 0.079) at post-test, main- ness tained at follow-up (p = 0.87) GQ-6 (Gratitude Question- Control: naire) for gratitude No significant improvement in any score at post-test or LOT-R (Life Orientation Test- follow-up Revised) for optimism Harry et al., 2012 [33] Educational video “Be Smart, Video “Cancer Patients, and 40 questions related to the Baseline Intervention: Beat Skin Cancer” in ASL Family Support” in ASL content of intervention video Post-intervention Significant improvement at with open captioning post-test (p ≤ 0.001) Control: No significant improvement Hickey et al., 2013 [34] Educational video about breast –- 10 questions on breast cancer Baseline Cohort: Significant improve- cancer in ASL with open Post-intervention ment at post-test, and follow- captioning 2 months up (p ≤ 0.01) Correlation between self- assessed, and actual breast cancer knowledge (r = 0.271; p = 0.003) Associations for breast cancer knowledge with screening (p = 0.005), and mammogram (p = 0.07) practices as well as education (p < 0.001) Jensen et al., 2013 [35] Educational video “Finding, –- 29 questions on general, and Baseline Cohort: and Surviving Ovarian Can- ovarian cancer Post-intervention Significant improvement at cer” in ASL, and English post-test (p ≤ 0.001) captioning Comparison with hearing patients: Hearing have significantly higher baseline knowledge (p < 0.001), and mean increase at post-test (p < 0.001) Deaf have significantly higher cancer knowledge at post-test compared to hearing pre-test (p = 0.021) 10 Journal of Cancer Education (2023) 38:3–15 1 3 Table 3 (continued) Intervention Control Assessment methods Follow-up Results Kaskowitz et al., 2006 [36] Educational PowerPoint –- 21 questions related to the Baseline Cohort: presentation about prostate presentation about prostate Post-intervention Significant improvement at cancer in ASL cancer 2 months post-test, and follow-up (p ≤ 0.05) Trend upwards from post-test to follow-up Cancer screening: Non-significant increase in prostate specific antigen, and rectal exam screenings at follow-up (age 50 +) Adverse events: Deterioration for one question at post-test (“Cancer is a dis- ease that usually passes from parents to children.”, correct answer: negation) Palmer et al., 2017 [37] Video about cancer genetics English text about cancer 17 questions on cancer Baseline (within 2 weeks Intervention/control: information in ASL with genetics information, same genetics, and 8 on genetic before) Significant improvement at English closed captioning content counseling Post-intervention (within post-test (p < 0.001) 2 weeks after) High education significant improvement (p < 0.001) Control: Low education no significant improvement (p = 0.79) Intervention: Low education significant improvement (p < 0.001) Cancer screening: Significantly more interven- tion participants feel “very confident” about develop- ing a family tree to identify inherited cancer risk factors (p = 0.005) Journal of Cancer Education (2023) 38:3–15 11 1 3 Table 3 (continued) Intervention Control Assessment methods Follow-up Results Sacks et al., 2013 [38] Educational video “Prostate, –- 4 questions on general cancer Baseline Cohort: and Testicular Cancer: Know knowledge, and 21 on tes- Post-intervention Significant improvement at your Options” in ASL, and ticular cancer knowledge post-test (p < 0.001) English captioning Comparison with hearing patients: Hearing have significantly higher baseline knowledge (p < 0.001), and mean increase at post-test (p < 0.001) Deaf have significantly higher cancer knowledge at post-test compared to hearing pre-test (p < 0.001) Sadler et al., 2001 [39] Breast cancer education –- 7 questions on breast cancer Baseline Cohort: session in ASL with open Post-intervention Significant improvement for 5 captioning answers at post-test (p ≤ 0.05) Shabaik et al., 2010 [40] Educational video “Colorectal National Cancer Institute’s 7 questions on cancer in Baseline Intervention: Cancer: Take Action!” in PowerPoint presentation general, and 13 on colorectal Post-intervention Significant improvement at ASL with open captioning “The Basics” in ASL about cancer 2 months post-test (p ≤ 0.05) cancer in general Cross-over group had signifi- cantly greater improvement at follow-up than original group in CRC knowledge (p ≤ 0.05) Control: No significant improvement Yao et al., 2012 [41] Educational video “Cervical –- 7 questions on cancer in Baseline Cohort: Cancer: Catch It Early, and general, and 5 on cervical Post-intervention Significant improvement at Save Your Life” in ASL with cancer post-test (p < 0.001) English captioning Comparison with hearing patients: Hearing have significantly higher baseline knowledge (p < 0.001) Deaf have significantly higher mean increase at post-test (p < 0.001) Zazove et al., 2012 [42] Educational video about can- Video with same content in 12 questions related to the Baseline Intervention/control: cer prevention in ASL with spoken English with cap- content of the video Post-intervention Significant improvement at captioning tions 1 month post-test (p < 0.001), and first 6 months follow-up (p ≤ 0.01), and sec- ond follow-up (p ≤ 0.05) 12 Journal of Cancer Education (2023) 38:3–15 revealed that only the high education group reached com- Centre for Evidence-Based Medicine: Levels of Evidence parable results. The low education group improved under scale. Cumberland et al. [29] was downrated to level 2 — intervention conditions only. The Zazove et al. [42] control due to imprecision of its question and missing statistical was exposed to the same video as the intervention without analysis. an ASL interpreter, but with captions. They showed that both groups improved equally signic fi antly from baseline to post- test and could retain their knowledge at both follow-ups. Three control arms [28, 33, 40] did not show any significant Discussion improvement. In these cases, questionnaires were designed for the intervention. Three cohort studies included hearing Interpretation individuals [35, 38, 41]. In all cases, the hearing cohort had a significantly higher baseline knowledge. Yao et al. [41] Inadequate health literacy is one common characteristic of could show higher knowledge increase for the DHH cohort. DHH patients. Tailored health literacy programs are one In both other studies [35, 38], the hearing cohort had higher way to meet their individual health needs [15, 16]. Existing increase. Still, the DHH post-test scores exceeded hearing data focus on deaf patients and programs including an ASL pre-test scores. interpreter. As the DHH population has heterogenous com- In three studies [28, 29, 36], deteriorations for some munication needs, strengths, and preferences, it is necessary knowledge questions could be observed post-interventional. to develop further formats that are adapted to the needs of These effects seem to be caused by confusion and do not hard of hearing people who depend on auditory input. As affect the overall efficacy of the interventions. this target group consists of mainly older individuals with higher incidences of malignant diseases, existing programs Cancer Screening could be modified towards their needs. Our results match closely with previous studies [14]. Edu- Three studies with 480 participants surveyed post-interven- cational programs adapted to the needs of the deaf are an tional cancer screening behavior. Two of these studies had a effective way to promote cancer health literacy [16]. The high [36, 37], and one an acceptable quality [29]. All studies limited number of included cancer entities, interventional assessed hearing loss via self-reported and were carried out studies, and small population within the American Deaf in the USA. Cumberland et al. [29] had the longest follow- community indicate insufficient evidence. up of 12 months and reported a significant post-interven- Although most interventions used ASL interpreters to tional increase in screening behavior for both groups after convey information, appropriate English captioning could be 12 months [29]. Kaskowitz et al. [36] found hints at more sufficient [42]. One study [37 ] considered education levels prostate specific antigen and digital rectal exam screenings in the analysis of their results. The distribution of educa- for deaf men older than 50 years after 2 months [36]. Palmer tion levels between both groups was equal but there are no et al. [37] detected a significant increase in confidence about data on correlation between education levels and degree of developing a family tree to identify inherited cancer risk fac- hearing loss. The control read a text instead of watching a tors. Actual behavior was not assessed [37]. video and comprised more hard of hearing individuals than the intervention: 12% and 4%. A reasonable explanation Coping Skills for these findings could be that the high education group tended to include persons with lesser degrees of hearing Three studies [27, 31, 32] report by an example of the same loss and therefore relied on texts. This implies that persons 45 NF-2 patients that adding resiliency skill training to more skilled in using written language would benefit pri- health literacy educational programs reduces depressive marily from texts or captions, while predominantly visual symptoms (p ≤ 0.01) as well as perceived stress (p ≤ 0.001) processors of information would benefit primarily from ASL and improves quality of life (p ≤ 0.001) as well as some interpreters. Responding to the heterogeneous communica- aspects of resiliency (p ≤ 0.01) significantly af ter interven- tion preferences of DHH persons (text respectively caption- tion. The improvements maintain significant after 6 months. ing and ASL interpreting) is essential for full accessibility. The results are affected by a small sample bias, and a high Adding clear speech to existing programs could be an easy drop-out, and therefore have an acceptable quality. step to meet further individual needs. However, hearing individuals had higher increases in Certainty of Evidence cancer knowledge in deaf-tailored programs [35, 38, 41]. An explanation may be that deaf audiences find it hard to According to its research designs, nine included RCTs were adopt health information with unfamiliar words and complex rated level 2 and seven cohort studies level 3 on the Oxford grammar [43]. 1 3 Journal of Cancer Education (2023) 38:3–15 13 We also identified publications with a new approach. studies, but we wanted to ground our implications on high Interventions addressing coping mechanisms for neurofi- certainty of evidence and to know in which extent these bromatosis type II associated hearing loss provide hints for data are available. Previous reviews including low certainty their efficacy. They are affected by attrition bias as well as data [9] were able to present more eligible studies but found very small sample sizes and target at a specific population mainly surveys as well as interviews, and only two interven- [27, 31, 32]. Although affected patients seem to profit from tions. We searched two common databases and restricted our this different approach, it is rather unlikely that it influences results to English and German. Despite these methodologi- communication between oncologists and their patients. cal limitations, we are confident to present sound results. Aside from health literacy, we also paid attention to can- cer screening rates, a meaningful parameter for the ee ff ctive - Implications ness of educational interventions. They depict persistence, actual use, and benefit of cancer health education. Three We can state that accessible education programs are an studies could show an increase in screening rates [29, 36, effective way to promote cancer health literacy among deaf 37]. More data are desirable. patients and can therefore have a beneficial influence on oncologist-patient communication. Still, we cannot say the Limitations of Evidence degree to which the effect is dependent on communication preferences and grade of hearing loss. Present data do not All interventions were carried out in the USA and comprise include audiometric assessments. Surveyed interventions only seven cancer-related topics. Although not all findings mostly used ASL interpreters to convey information. It is obtained in this context might be applicable to different conceivable that especially milder forms of hearing loss countries, general principles of health education remain the would profit from texts or adequate captioning as it meets same and can be adapted in other countries and on differ - their preferred communication mode. Hence, it must be sur- ent topics. Nevertheless, studies including more participants veyed if given approaches are equally effective for all kinds and addressing further topics are desirable. Included inter- of hearing loss, and if existing methods could be modified. ventions concentrated primary on deaf patients. No data Further studies with more diverse populations, various can- were given on the reason and extent of hearing loss as it cer entities, different methods, and exact hearing loss assess- was measured through self-report. We do not either know, if ments are required. participants were allowed to use hearing-aids. We cannot say Plenty of advice for physicians on how to interact with the degree to which results are applicable to milder forms of DHH patients contrasts with only rudimentary evaluated hearing loss. All included studies are affected by a selection measures of physician–patient communication. To verify bias due to their sampling techniques and a volunteer bias. these recommendations and to explore most beneficial com- They lead to high baseline scores as participants originate munication strategies for DHH patients, further research is from a medically interested population. Apart from Cumber- strongly recommended. land et al. [29], included studies present complete statistical data. Only three studies surveyed screening rates and one had a long follow-up of 12 months. As it is a long-term Author Contribution All authors contributed equally to this work. parameter surveys presupposes sufficiently long follow-up Funding Open Access funding enabled and organized by Projekt periods. Longer follow-ups may have led to higher screen- DEAL. ing rates. We could not find any data on direct communication strat- Declarations egies for oncologists. A reason for this may be that meas- ures of physician–patient communication reveal mainly poor Conflict of Interest The authors declare no conflicts of interests. internal consistency and content validity [44]. A related review on “Impact of Hearing Loss on Patient–Provider Open Access This article is licensed under a Creative Commons Attri- Communication Among Hospitalized Patients” demon- bution 4.0 International License, which permits use, sharing, adapta- tion, distribution and reproduction in any medium or format, as long strated adverse effects of hearing loss on patient–provider as you give appropriate credit to the original author(s) and the source, communication and found out that simple bedside interven- provide a link to the Creative Commons licence, and indicate if changes tions such as voice amplifiers improved communication [ 9]. were made. The images or other third party material in this article are included in the article's Creative Commons licence, unless indicated otherwise in a credit line to the material. 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Journal

Journal of Cancer EducationSpringer Journals

Published: Feb 1, 2023

Keywords: Cancer; Health literacy; Education; Deaf; Hard of hearing; Communication

References