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. 2024 Mar 21;150(5):393–404. doi: 10.1001/jamaoto.2024.0214

Decisional Conflict and Decision Regret in Head and Neck Oncology

A Systematic Review and Meta-Analysis

Anne Nadine Heirman 1, Coralie Romé Arends 1, Dominique Valérie Clarence de Jel 1, Richard Dirven 1, Lisette van der Molen 1, Gyorgy Bela Halmos 2, Michiel Wilhelmus Maria van den Brekel 1,3, Martijn Matthias Stuiver 1,4,5,✉
PMCID: PMC10958390  PMID: 38512270

Key Points

Question

What are the prevalence and degree of decisional conflict (DC) and decision regret (DR) in patients treated for head and neck cancer (HNC)?

Findings

In this systematic review of 28 studies and meta-analysis of 16 studies, 22.6% to 47.5% of patients with HNC experienced DC. Meta-analysis of 11 studies on the prevalence of DR as measured with validated questionnaires gave an overall pooled prevalence of 71%, while the pooled prevalence in the study-specific questionnaires group was 11%.

Meaning

This study showed that there were limited data on DC and DR in patients with HNC; however, the available evidence suggests that DC and DR are highly prevalent in these patients.

This systematic review and meta-analysis examines the prevalence and extent of decisional conflict and decision regret among patients with head and neck cancer.

Abstract

Importance

Head and neck cancer (HNC) often requires treatment with a major impact on quality of life. Treatment decision-making is often challenging, as it involves balancing survival against the preservation of quality of life and choosing among treatments with comparable outcomes but variation in morbidity and adverse events; consequently, the potential for decisional conflict (DC) and decision regret (DR) is high.

Objectives

To summarize the literature on DC and DR in HNC, to give an overview of its prevalence and extent, and to advise on clinical practice and future research.

Data Sources

Embase, Web of Science, MEDLINE, and PsycINFO were searched up to February 24, 2023, including all years of publication.

Study Selection

Eligible studies addressed DC and/or DR as primary or secondary outcomes with any instrument in HNC, except cutaneous tumors. Two mutually blinded researchers conducted screening and inclusion with support of an artificial intelligence assistant and conducted risk of bias (ROB) assessment.

Data Extraction and Synthesis

The Preferred Reporting Items for Systematic Review and Meta-Analyses guidelines were followed for data extraction. ROB assessments were done using Critical Appraisal Skills Programme (qualitative) and CLARITY (quantitative). Meta-analysis with a random-effects model was used to obtain pooled prevalence estimates for DC and DR when at least 4 sufficiently clinically homogeneous studies were available.

Main Outcomes and Measures

Prevalence of DC (qualitative, Decisional Conflict Scale, SURE questionnaire) and DR (qualitative, study-specific questionnaires, Decision Regret Scale, Shame and Stigma Scale).

Results

Overall, 28 studies were included, with 16 included in meta-analyses for DR prevalence. The pooled prevalence of clinically relevant DR above the cutoff score for validated questionnaires (11 studies; 2053 participants) was 71% (95% CI, 58%-82%; I2 = 94%), while for study-specific questionnaires (5 studies; 674 participants) it was 11% (95% CI, 5%-22%; I2 = 92%). Only 4 studies investigated DC, showing a prevalence of 22.6% to 47.5% above cutoff values. Derived overarching themes found in qualitative studies were preparation, shared decision-making roles, information, time pressure, stress of diagnosis, and consequences.

Conclusions and Relevance

Although limited data on DC and DR were available, the studies performed indicated that DC and DR are highly prevalent issues in HNC. Results suggest that study-specific questionnaires underestimated DR. The findings underscore the rationale to improve counseling and shared decision-making for this patient population.

Introduction

Head and neck cancer (HNC) often requires complex treatment. The head and neck area houses numerous vital anatomical structures responsible for essential functions like speaking, breathing, eating, and swallowing. During HNC treatment, these structures may be damaged, leading to functional impairments. In addition, HNC treatment can lead to disfigurement. These adverse effects lead to a deterioration of quality of life (QoL).1

HNC is often curable when treated in an early stage, whereas advanced stages of disease have a higher mortality rate and also significantly higher morbidity.2,3 HNC is a rare and aggressive disease in which numerous difficult decisions must be made based on relatively limited information and time.4 Also, there is a trade-off between survival and QoL.5

When making a treatment choice, patients can experience decisional conflict (DC). DC is a state of uncertainty that arises when a person faces a challenging decision with competing options and feels unsure about which choice to make.6,7 DC has many negative consequences, such as delay in decision-making, making treatment choices that are not in line with patients’ preferences, and decision regret (DR).8,9,10,11,12

DR is a negative feeling associated with grief, disappointment, or distress following a decision regarding health care. DR is a complex construct that is associated with multiple variables, such as sociodemographic characteristics, disease, adverse effects, and chosen treatment, but primarily with DC and received information.13,14,15 DR may have serious consequences, such as decline in QoL, incomplete recovery from treatment, and depression.13,16 Given the complex nature of the decisions to be made in HNC and the many risk factors predisposing for DC and DR that are often present in this patient population, such as lower health literacy, frailty, and psychosocial problems,17,18 DC is looming and the potential for developing DR is high.

This systematic review and meta-analysis aims to provide an overview of the current literature on DC and DR in patients with HNC and to obtain reliable estimates of prevalence and degree. Such insights are important for guiding clinical practice and future research.

Methods

Study Design

This is a systematic review and meta-analysis about DC and DR in patients with HNC, reported following the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) guidelines.19 The review was registered in the PROSPERO database prior to starting the search (CRD42021267872).

Literature Search Process

A sensitive literature search was developed with support of a medical librarian and adapted for the following databases: MEDLINE (Ovid), Embase, PsycINFO (Ovid), and Web of Science. The search strategy, with a final search on February 24, 2023, included terms relating to HNC and DC and/or DR. The search consisted of both database-specific thesaurus terms (where applicable) and terms to search in the title, abstract, and keywords. The simplified structure of the search was (head and neck cancer) AND (decisional conflict OR decisional regret). eAppendix 1 in Supplement 1 presents full details of the search strategy. No restrictions on language or publication period were applied. References of the included articles were checked to identify any potentially relevant missed publications.

Inclusion Criteria

Eligible studies were quantitative, qualitative, or mixed-methods studies addressing DC and/or DR in patients with HNC of any stage and receiving any treatment. DC and DR could be primary or secondary outcomes and could be measured with any instrument, including study-specific questionnaires. Studies with participants younger than 18 years, conference abstracts, and studies on cutaneous carcinomas were excluded.

Selection Process

After deduplication, all identified records were uploaded into online artificial intelligence (AI) software.20 Because of the high yield of our search, we used this AI tool to support screening.21 The AI algorithm calculates the likelihood of eligibility for records, based on a first set of manual inclusions (training data). Potential eligibility of new records is represented on a 0- to 5-star scale, with 5 stars indicating the highest likelihood for eligibility.

To avoid missing any relevant record, we manually screened 50% of all records, focusing on keywords regret, conflict, or shared decision-making (SDM) in the title or abstract, before letting the AI algorithm rate the remaining records. Next, we manually screened 2000 records in descending rating order, after which ratings were recalculated for the remainder. Of those, we manually screened all 2.5-star records and a random sample of 10% of the lower-rated records.

All records were screened by 2 mutually blinded researchers (A.N.H. and D.V.C.d.J. or C.R.A). Included articles were labeled by topic (DR or DC), study design, and tumor location. Discrepancies were resolved by consensus.

Data Extraction

Data extraction included author, year of publication, study type, study population, tumor location(s), tumor stage, treatment modalities, methods of measurement for DR and DC, and all reported data regarding DR and DC. Since studies used different scales and measures for point estimates and dispersion (due to different underlying distributions), which would prohibit useful meta-analysis, we used a dichotomous outcome (present or absent) for the meta-analyses. Where needed, authors were contacted for data regarding the prevalence of DC and/or DR in their sample.

Quality and Risk of Bias Appraisal

All appraisals were done by 2 mutually blinded researchers (A.N.H. and D.V.C.d.J. or C.R.A) and were discussed until consensus. For quantitative research designs, we used the CLARITY checklist for assessing Risk of Bias (ROB) in Cross-Sectional Surveys.22 This 5-item tool addresses population, response rate, missing data, clinical sensibility, reliability, and validity of the survey instrument. We rated the ROB for the reliability and validity items as low if a study used a scale that had been (previously) validated.

The Critical Appraisal Skills Programme (CASP) Qualitative Studies Checklist was used for qualitative studies.23 This 10-item checklist consists of 3 sections pertaining to the validity, results, and the extent to which the results are valuable for the context in which the study is used.

Statistical Analysis

Data from qualitative studies were analyzed through inductive content analysis.24 Themes as reported were extracted and coded by A.N.H. In a group meeting (A.N.H., C.R.A., and D.V.C.d.J.), similar but differently worded themes were combined under a single term. Overlap between themes was examined, and themes describing different but related concepts were merged into a higher-order overarching theme. Finally, we examined overall saturation of the data.

When at least 4 sufficiently homogeneous quantitative studies were available, we calculated pooled prevalence estimates for DC and DR, using the generalized linear mixed model (GLMM) because of high variance in events and sample sizes.25 Since considerable heterogeneity was expected, considering different tumor locations and treatments as well as differences between countries and hospitals, we adopted a random-effects model. The between-study component of variance τ2 was estimated by use of the DerSimonian-Laird method. Subgroup analyses were performed on type of used instrument. All analyses were done in R version 4.2.2 (R Project for Statistical Computing) and Rstudio (Posit Software), using packages meta26 and metafor.27

Results

Study Selection

The search yielded 27 258 records. Following deduplication, 16 009 unique articles remained. Of the manually screened first 50% of records, 178 publications were retained for full-text screening. AI ratings for the remaining 7180 records ranged from 4.5 stars (1 record), 3.5 stars (66 records), to 2.5 stars and lower (7113 records). After screening the 2000 highest-ranked records, the 4.5-star and 13 of the 3.5-star records were retained for full-text screening. After score recalculation, the 660 records with a 2.5-star rating were screened, and none were included. After a second recalculation, the remaining 4520 articles received 1.5 stars or fewer. Of these, 500 random records (>10%) were screened, without any inclusions, after which the remaining records were discarded. Thus, 192 studies were retained for full-text review, of which 164 were subsequently excluded mostly because of ineligible outcomes (105 studies), leaving a total of 28 included studies for data extraction (eFigure in Supplement 1).

Description of Included Studies

Of the 28 included studies, 5 had a qualitative design (3 for DC,28,29,30 1 for DR,31 and 1 for DC and DR32) and 23 were quantitative (3 for DC,33,34,35 19 for DR,28,36,37,38,39,40,41,42,43,44,45,46,47,48,49,50,51,52,53 and 1 for DC and DR54). Publication dates ranged from 1980 to 2022, and 12 studies28,32,33,34,35,43,45,46,47,51,52,53 were less than 5 years old.

Two quantitative studies reported on the same study using different but overlapping subsamples (Windon et al28,36). Only the data from the larger study36 were used for meta-analysis.

For 10 quantitative studies,36,37,38,44,45,46,47,49,50,54 we contacted the authors for additional data regarding the prevalence of DR. For 2, the raw data were no longer available (Gill et al37 and Shuman et al54). One study by Shaverdian et al38 considered DR of a deescalation treatment instead of regular treatment, and we excluded this study from the meta-analysis on grounds of clinical heterogeneity. Hence, meta-analyses were performed on 16 articles,28,39,40,41,42,43,44,45,46,47,48,49,50,51,52,53 using 3 different instruments (eAppendix 2 in Supplement 1): study-specific questionnaires, the Shame and Stigma Scale (SSS), and the Decision Regret Scale (DRS).

Qualitative Studies

Risk of Bias

Three of the 5 qualitative studies had a low ROB.28,29,31 All had clear aims and a thorough method. One article32 did not comment on the relationship between researcher and study participants. Another article30 did not have dedicated results and discussion sections and was therefore rated as high ROB (Table 1).28,29,30,31,32,33,34,35,36,37,38,39,40,41,42,43,44,45,46,47,48,49,50,51,52,53,54

Table 1. Qualitative Risk of Bias.
Source 1. Clear aim of research? 2. Appropriate methods? 3. Appropriate design? 4. Appropriate recruitment strategy? 5. Appropriate data collection? 6. Researcher-participant relationship described? 7. Considered ethical issues? 8. Rigorous data analysis? 9. Clear statement of findings? 10. Is the research valuable? Overall risk of bias assessment
Noonan and Hegarty,31 2010 Yes Yes Yes Yes Yes Yes Yes Yes Yes Yes Low
Gibson et al,32 2021 Yes Yes Yes Yes Yes No Yes Yes Yes Yes Medium
Edwards,30 1998 Yes Yes Yes Yes Yes Yes Yes Yes No No High
Bisschop et al,29 2017 Yes Yes Yes Yes Yes Yes Yes Yes Yes Yes Low
Windon et al,28 2021 Yes Yes Yes Yes Yes Yes Yes Yes Yes Yes Low
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Data Synthesis

For all 5 articles, DC and DR were secondary outcomes and without evidence for data saturation. The participants in the 4 qualitative studies investigating DC mentioned that time pressure, emotions, receiving too much and too complicated information, and a lack of practical information caused DC.28,29,30,32 Derived overarching themes relating to DC were preparation, SDM roles, information, time pressure, and stress of diagnosis. Derived themes relating to DR were consequences, which included altered appearance, depression, functional consequences, and ambivalence (Table 2).28,29,30,31,32

Table 2. Results Qualitative Studies.
Source Study aim Tumor location Tumor stage Treatment Participants, No. Reported themes Construct Derived themes
Noonan and Hegarty,31 2010 To describe the experience of total laryngectomy from patients’ perspectives Larynx NA Laryngectomy 10

  1. Psychological concerns: depression; regrets; personal resolve

  2. Functional difficulties: physical; speech

 DR

  • Consequences

  • Ambivalence
Gibson et al,32 2021 To explore the experience of survivors of head and neck cancer, with a focus on the psychosocial impact of altered appearance Head and necka NA Surgery, radiation, chemotherapy 21

  1. Preparation: decision-making; preparation for altered appearance

  2. Consequences: reactions from others; adapting to altered appearance

  3. Altered appearance: weight loss; face, skin and hair changes; reconstructive surgery

 DR and DC

  • Consequences

  • Preparation

  • Information

  • SDM roles

  • Ambivalence
Edwards,30 1998 To find out what patients, their families, and professionals thought of head and neck cancer services Head and necka NA NA 22 Patients, 11 relatives

  1. Choice: treatment; involvement

  2. Information (understanding)

  3. Psychological support

  4. Hospital accommodation

  5. Coordination and administrative difficulties

  6. Teamwork

 DC

  • SDM roles

  • Information

  • Stress of diagnosis

  • Time pressure
Bisschop et al,29 2017 To investigate the experiences and preferences within a group of patients with head and neck cancer, to fill the gap in existing knowledge Oral cavity, oropharynx, larynx I-IV NA 19

  1. Information, communication, and education

  2. Respect for patients’ values, preferences, and expressed needs

  3. Involvement of family and friends

  4. Emotional support and alleviation of fear and anxiety

  5. Coordination and integration of care

  6. Physical comfort

 DC

  • Preparation

  • Information

  • SDM roles
Windon et al,28 2021 To describe the experiences and needs of patients making decisions regarding primary treatment for their oropharyngeal cancer Oropharynx I-IV CRT, surgery, surgery with RT, surgery with CRT 11 Pretreatment patients, 15 posttreatment patients

  1. Emotional response: alarm at cancer diagnosis; DC

  2. Roles in decision-making: trust in treatment team; shared decision with physician, team; shared decision with spouse; ultimately decisional autonomy

  3. Other factors influencing treatment decision-making: desire for physical tumor removal; fear of adverse effects of treatment; possible need for adjuvant therapy obviated advantage of surgery; patient-specific values

  4. Informational needs: felt generally well-informed; patient-centered information would be helpful; internet is a poor resource for information-gathering; advantage of hearing from posttreatment survivors

 DC

  • Stress of diagnosis

  • Preparation

  • Information

  • Time pressure

  • SDM roles
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Abbreviations: CRT, chemoradiotherapy; DC, decisional conflict; DR, decision regret; NA, not applicable; RT, radiation therapy; SDM, shared decision-making.

a

Not otherwise specified.

Quantitative Studies

Risk of Bias

All 23 studies had representative populations (Table 3). Seventeen studies28,33,34,36,37,38,44,45,46,47,48,49,50,51,52,53,54 had a low ROB. Most uncertainties were due to inadequate reporting on missing data and response rates. Overall, studies using study-specific questionnaires had a higher ROB compared with studies using validated questionnaires. Studies published prior to 2010 were less consequent in reporting information necessary for assessing ROB.39,40,41,42

Table 3. Quantitative Risk of Bias.
Source 1. Is the source population representative of the population of interest? 2. Is the response rate adequate? 3. Is there little missing data? 4. Is the survey clinically sensible? 5. Is there evidence for the reliability and validity of the instrument? Overall risk of bias assessment
Panda et al,33 2022 Probably yes Definitely yes Definitely yes Definitely yes Definitely yes Low
Hoesseini et al,34 2023 Probably yes Definitely yes Definitely yes Definitely yes Definitely yes Low
Wamkpah et al,35 2021 Probably yes Definitely no Definitely yes Definitely yes Definitely yes Low/medium
Shuman et al,54 2017 Probably yes Definitely yes Definitely yes Definitely yes Definitely yes Low
Burns et al,39 1987 Probably yes Probably no Probably no Probably no Definitely no High
Dutkiewicz et al,40 2002 Probably yes Probably no Probably yes Probably no Definitely no Medium/high
Derks et al,41 2004 Probably yes Definitely yes Probably no Probably no Definitely no Medium/high
Vartanian and Kowalski,42 2009 Probably yes Probably no Probably yes Probably no Definitely no Medium/high
Ivkovic et al,43 2022 Probably yes Probably no Probably yes Definitely no Definitely no High
Kissane et al,44 2013 Probably yes Definitely yes Probably no Definitely yes Definitely yes Low
Pirola et al,45 2020 Probably yes Definitely yes Definitely yes Definitely yes Definitely yes Low
Delalibera et al,46 2021 Probably yes Probably yes Probably no Definitely yes Definitely yes Low
Cai et al,47 2022 Probably yes Probably no Definitely yes Probably yes Definitely yes Low
Gill et al,37 2011 Probably yes Definitely yes Definitely yes Probably yes Probably yes Low
Goepfert et al,48 2017 Probably yes Probably no Definitely yes Definitely yes Definitely yes Low
Ho et al,49 2017 Probably yes Definitely yes Unanswerablea Definitely yes Definitely yes Low
Thomas et al,50 2019 Probably yes Definitely yes Probably yes Definitely yes Definitely yes Low
Shaverdian et al,38 2019 Probably yes Definitely yes Probably yes Definitely yes Definitely yes Low
Windon et al,28 2021 Probably yes Probably no Probably yes Definitely yes Definitely yes Low
Windon et al,36 2019 Probably yes Probably yes Probably no Definitely yes Definitely yes Low
Nallani et al,51 2022 Probably yes Definitely yes Probably yes Definitely yes Definitely yes Low
Köksal et al,53 2022 Probably yes Definitely yes Definitely yes Definitely yes Definitely yes Low
Liu et al,52 2022 Probably yes Definitely yes Probably no Definitely yes Definitely yes Low
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a

This was a letter to the editor; all questions were answered except No. 3.

Decisional Conflict

Of the 4 included studies,33,34,35,54 3 used the Decisional Conflict Scale (DCS).11 One study54 only included laryngeal carcinomas and found a mean DCS score of 25.6 (range, 0-78). The authors had no access to the raw data to obtain prevalence. The 2 other studies33,34 included multiple HNC sites and found DC prevalence of 33.3% and 47.5%, respectively. The fourth study35 used the SURE questionnaire55 and found that 22.6% of patients reported DC. We refrained from meta-analysis given that there were only 4 studies, using 2 types of instruments (Table 4; eAppendix 2 in Supplement 1).28,33,34,35,36,37,38,39,40,41,42,43,44,45,46,47,48,49,50,51,52,53,54

Table 4. Quantitative Results.
Source Tumor location Stage Treatment Participants, No. Questionnaire Timing Results
DC
Shuman et al,54 2017 Larynx I-IV Surgery, radiation, chemotherapy 57 DCS 6 mo to 3 y After treatment Mean (SD) score, 25.6 (20.1); range, 0-78
Panda et al,33 2022 Head and necka NA Surgery, radiation, chemotherapy 27 DCS 1 wk After consultation with surgical oncologist, prior to surgery DCS <25 among 18 participants (66.7%); DCS ≥25 among 9 (33.3%)
Hoesseini et al,34 2023 Larynx, oropharynx, oral cavity, hypopharynx, nasopharynx, parotid gland I-IV Surgery, radiation, chemotherapy 263 DCS Within 2 wk after treatment decision consultation DCS <25 among 138 participants (52.5%); DCS ≥25 among 125 (47.5%); DCS ≥25-37.5 among 87 (33.1%); DCS ≥37.5 among 38 (14.4%)
Wamkpah et al,35 2021 Head and necka NA Surgery 53 SURE ≥12 h Before surgery DC absent among 41 participants (77.4%); present among 12 (22.6%)
DR
Burns et al,39 1987 Larynx, oral cavity, pharynx, paranasal sinuses IV Surgery, radiation, chemotherapy, adjuvant (C)RT 76 Study specific After treatmenta 27 Patients (35.5%) experienced DR; 49 (64.5%) did not
Dutkiewicz et al,40 2002 Larynx NA Surgery: partial and total laryngectomy 170 Study specific After treatmenta 11 Patients (6.4%) experienced DR; 159 (93.6%) did not
Derks et al,41 2004 Larynx, oral cavity, pharynx II-IV Surgery, radiation, chemotherapy, adjuvant (C)RT 121 Study specific 1 y After treatment 19 Patients (15.7%) experienced DR (5 [4.1%] mild and 14 [11.6%] moderate-strong); 102 (84.3%) did not
Vartanian and Kowalski,42 2009 Larynx, oral cavity, oropharynx, hypopharynx T3, T4 Surgery, adjuvant RT 273 Study specific 1-26 y After treatment (median, 5.2) 14 Patients (5.1%) experienced DR; 259 (94.9%) did not
Ivkovic et al,43 2022 Oral cavity III-IV Commando procedure 34 Study specific 1 to 5 y After treatment 2 Patients (5.9%) experienced DR; 32 did not
Kissane et al,44 2013 Oral cavity, pharynx, larynx I-IV Surgery 104 SSS 3 mo After treatment Mean (SD) score, 29.45 (23.94); median (IQR) score, 25 (8.3-41.7); 85 patients (81.7%) experienced DR (37 [35.6%] mild; 48 [46.1%] moderate-strong); 19 (18.3%) did not
Pirola et al,45 2020 Oral cavity, pharynx, larynx, nasal cavity, thyroid NA NA 122 SSS After treatmenta Mean (SD) score, 32.04 (28.7); median (IQR) score, 25 (0-58.3); 88 patients (72.1%) experienced DR (29 [23.8%] mild; 59 [48.3%] moderate-strong); 34 (27.9%) did not
Delalibera et al,46 2021 Oral cavity, pharynx, larynx, unknown primary I-IV Surgery, radiation, chemotherapy, adjuvant (C)RT 42 SSS During primary, adjuvant, or postoperative radiotherapy Mean (SD) score, 39.3 (33.1); 32 patients (76.2%) experienced DR (7 [16.7%] mild; 25 [59.5%] moderate-strong); 10 did not (23.8%)
Cai et al,47 2022 Nasopharynx I-IV NA 218 SSS After treatmenta Mean (SD) score, 32.8 (24.8); median (IQR), 31.3 (12.5-50); 187 patients (85.8%) experienced DR (74 [33.9%] mild; 113 [51.9%] moderate-strong); 31 (14.2%) did not
Gill et al,37 2011 Head and necka NA Radiation 30 DRS >6 mo After treatment Mean (SD) score, 12.33 (14.37); range, 0-50
Shuman et al,54 2017 Larynx I-IV Surgery, radiation, chemotherapy 57 DRS 6 mo to 3 y After treatment Mean (SD) score, 16.2 (17.3); range, 0-60
Goepfert et al,48 2017 Oropharynx I-IV Surgery, radiation, chemotherapy 935 DRS >1 y After treatment (median, 6 y) Mean (SD) score, 12.7 (16.3); 574 patients (61.4%) experienced DR (428 [45.8%] mild; 146 [15.6%] moderate-strong); 361 (38.6%) did not
Ho et al,49 2017 Nasopharynx NA Radiation 78 DRS 5-15 y After treatment 11 Patients (14.2%) experienced DR (7 [9.0%] mild; 4 [5.2%] moderate-strong); 66 (85.8%) did not
Thomas et al,50 2019 Head and necka NA NA 180 of 274 Patients DRS 6 mo After treatment Mean score, 18.2; range, 0-09; 114 patients (63.3%) experienced DR (66 [36.7%] mild; 48 [26.7%] moderate-strong); 66 (36.7%) did not
Shaverdian et al,38 2019 Head and necka NA Deescalation chemoradiation 27 DRS 16 to 30 mo After treatment No patients experienced DR
Windon et al,36 2019 Oropharynx, oral cavity, larynx 0-IV Surgery, radiation, chemotherapy, adjuvant (C)RT 45 of 150 Patients DRS ≥6 mo After treatment (median, 7 mo) Median (IQR) score, 5 (0-25); 35 patients (55.5%) experienced DR (15 [33.3%] mild; 10 [22.2%] moderate-strong); 20 (44.5%) did not
Windon et al,28 2021b Oropharynx I-IV Surgery, radiation, chemotherapy, adjuvant (C)RT 37 DRS ≥6 mo After treatment (median, 8 mo) Median (IQR) score, 5 (0-20)
Nallani et al,51 2022 Oral cavity, oropharynx, hypopharynx, larynx O-IV Surgery, radiation, chemotherapy, adjuvant (C)RT 138 of 140 Patients DRS 3 mo After treatment Median (IQR) score, 20 (10-30); 118 (84.3%) experienced DR (76 [54.3%] mild; 42 [30%] moderate-strong); 20 (15.7%) did not
Liu et al,52 2022 NA NA Head and neck reconstruction with FFF or SFF 83 DRS FFF: median, 27 mo after treatment; SFF: median, 18.3 mo after treatment FFF: mean (SD) score, 22.7 (20.6); SFF: mean (SD) score, 19.2 (20.1); 71 patients (85.5%) experienced DR (42 [50.6%] mild; 29 [34.9%] moderate-strong); 12 (14.5%) did not
Köksal et al,53 2022 Nasopharynx, oropharynx, hypopharynx, larynx, oral cavity, sinuses, salivary glands NA Surgery, radiation, chemotherapy, adjuvant (C)RT 108 DRS 2 mo to 3.3 y After treatment Mean (SD), 23.94 SD (32.36); 64 patients (59.5%) experienced DR (33 [30.1%] mild; 31 [29.4%] moderate-strong); 44 (40.5%) did not
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Abbreviations: (C)RT, radiotherapy with or without chemotherapy; DC, decisional conflict; DCS, Decisional Conflict Scale; DR, decision regret; DRS, Decision Regret Scale; FFF, fibula free flaps; NA, not applicable; RT, radiation therapy; SFF, scapula free flaps; SSS, Shame and Stigma Scale; SURE, Sure of Myself, Understand Information, Risk-Benefit Ratio, Encouragement.

a

Not otherwise specified.

b

The second article by Windon et al28 used a subgroup of patients with oropharyngeal cancer from the earlier published article.36 Thus, the second article was not included in the meta-analysis.

Decisional Regret

Three different instruments were used in the 20 studies assessing DR (Table 4; eAppendix 2 in Supplement 1): study-specific questionnaires (5 studies39,40,41,42,43), the SSS (4 studies44,45,46,47), and the DRS (11 studies28,36,37,38,48,49,50,51,52,53,54).

Study-Specific Questionnaires

All 5 articles that used a study-specific questionnaire reported prevalence as primary outcome. Four were relatively old studies (1987-2009),39,40,41,42 1 was from 2022,43 and samples ranged from 76 to 273 participants. One of these studies40 investigated DR after surgical treatment for laryngeal cancer, and 1 after commando operation.43 The other 3 articles reported on a mix of HNC sites and treatments, but all in an advanced tumor stage.39,41,42 Overall, the prevalence of DR ranged from 5.1% to 35.5%.

Shame and Stigma Scale

Three of 4 studies44,45,46 using the SSS included a mix of tumors and stages, 1 only included nasopharyngeal tumors.47 The study populations varied from 42 to 219 participants. All authors provided additional data, with prevalence of DR ranging from 72.1% to 85.8%.

Decision Regret Scale

The 11 studies28,36,37,38,48,49,50,51,52,53,54 using the DRS were published between 2010 and 2022. Most studies included all tumor stages and a mix of treatments. Four studies38,48,49,50 used prevalence to report DR, of which 1 study38 examined the level of DR after choosing deescalation treatment instead of regular treatment and found that no participants experienced regret. Upon our request, 5 authors28,49,51,52,53 of the 8 we approached28,37,38,49,51,52,53,54 provided additional data for calculating prevalence estimates. With exclusion of the deescalation treatment study,38 the prevalence of DR varied from 14.2% to 85.5% (median, 61.4%). The lowest prevalence was reported in a study investigating DR in patients who had received radiation for nasopharyngeal tumors.49

Meta-Analysis of the Prevalence of DR

Data from 16 studies were included in the meta-analyses, with a total of 2727 participants, of whom 1452 (53%) had DR. We performed separate meta-analyses for the data of study-specific questionnaires (5 studies) and data of validated questionnaires (11 studies), the latter including a subgroup analysis for the SSS and DRS results.

The meta-analysis of validated questionnaires showed significant high heterogeneity (I2 = 94%) between studies (Figure, A). The overall pooled DR prevalence was 71% (95% CI, 58%-82%). One outlier (Ho et al49) concerned DR in patients with nasopharyngeal carcinoma receiving radiation therapy and reported a markedly lower prevalence (14%). Sensitivity analysis excluding this study reduced the DRS subgroup heterogeneity by only 5% (to 89%) and did not meaningfully change the overall results.

Figure. Forest Plot of Pooled Prevalence of Decisional Regret (DR).

Figure.

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Meta-analysis of the study-specific questionnaire group showed significant and high heterogeneity (I2 = 92%) (Figure, B). The pooled DR prevalence was 11% (95% CI, 5%-22%).

Discussion

With this systematic review, we aimed to provide a comprehensive overview of the quantitative and qualitative research on DC and DR in patients with HNC. Overall, the results suggest that DC and DR are common in patients with HNC and that the impact of DC and DR on these patients is substantial.

Quality and Completeness of the Evidence

A limited number of studies have been conducted over the years (1987-2022), with more studies in later years. However, research regarding this topic in HNC lags compared with more prevalent cancers.

Overall, the available studies are of good methodological quality, with the most pertinent ROB resulting from low response rates and the use of nonvalidated questionnaires. Notably, the validated questionnaires used in the included studies have also not been evaluated specifically for use in an HNC population. Detailed reporting on the timing of the measurement of DC and DR was lacking. The inclusion criteria and measurement instruments differed across studies, and results were heterogeneous. ROB may, in part, result from DC and DR being secondary outcomes in many of the included studies.

Main Results

Decisional Conflict

Between 1 in 4 and 1 in 2 patients with HNC reported DC. Although patients with HNC generally have poorer prognosis, more psychosocial problems, and lower health literacy, these figures are comparable with, or slightly lower than, the prevalence of DC in patients with prostate cancer (23%-61%)15,56,57,58,59,60 and with breast cancer (33%-67%),61,62,63,64,65 which have been studied more intensively. Further research is needed to obtain more reliable estimates of DC prevalence in patients with HNC.

Qualitative studies indicated that the stress of the diagnosis and lack of clear information regarding disease, treatments, and their impact led to a high level of DC in most patients. Lack of SDM made patients feel objectified. However, when patients did experience SDM, it was not always clear to them what their role was, which then led to additional uncertainty. Although we cannot know what level of SDM was applied, the results suggest a need for better implementation of SDM.

Increased attention to SDM has led to the development of patient decision aids. Such aids might overcome most of the issues leading to DC as mentioned by participants in the qualitative studies. Evidence suggests that patient decision aids can lead to a clinically meaningful reduction of DC.56,57,66,67 To date, only a few decision aids have been developed for patients with HNC, and impact evaluations of these tools are not yet available.68,69

Decision Regret

Compared with DC, DR has been studied more extensively. The prevalence of DR in the available studies differed vastly, ranging from 0% to 86%. The type of measurement instrument seemed to affect observed prevalence: study-specific questionnaires all showed a low prevalence (5%-36%), whereas the validated questionnaires showed higher prevalence (SSS, 72%-86%; DRS, 14%-86%), suggesting underestimation of DR when using unvalidated questionnaires.

DRS results were highly heterogeneous. Removing the outlier49 on nasopharyngeal cancer did not improve heterogeneity and had limited impact on results. The 6 other studies using the DRS consisted of a variety of HN tumors, stages, and treatments. Although we hypothesize that tumor location, stage, treatments, timing of measurement, and the occurrence of complications or poor outcomes affect the level of DR, the available studies prohibited comparisons of clinical subgroups due to the inclusion of mixed populations and limited reporting on these variables. Therefore, we were unable to explain the observed heterogeneity, and the pooled estimate of DR prevalence should be interpreted with caution. A recent systematic review16 investigating the extent and risk factors of DR after a variety of health care decisions showed that DR prevalence is higher in more complex or life-threatening diseases. The authors reported that risk factors associated with the decision-making process (eg, DC, satisfaction with information provided, role in decision-making) were most important, followed by treatment-related factors (eg, complications, adverse outcomes) and rarely sociodemographic characteristics (eg, age, education). However, the review did not include studies on HNC, and future research is needed to identify risk factors for DR in the HNC population.

Limitations

This study has limitations. We used a highly sensitive search to identify all possible studies. To manage the vast number of records retrieved, we used an AI-supported inclusion process. As a result, we did not manually screen all identified records. However, we used a very conservative approach, using a much higher than minimally recommended number of manual inclusion decisions70 and screening a substantial number of records with a 2.0-star rating or less. At a 2.5-star rating as threshold for exclusion, the sensitivity of the AI method is reported to be 100%.70 We therefore believe it is unlikely that we have missed relevant publications.

Conclusions

This systematic review and meta-analysis of DC and DR in patients with HNC highlights the limited and heterogeneous nature of research in this area, but it also indicates that DC and DR are highly prevalent and have a substantial impact on patients’ lives. More research is needed to investigate risk factors for DC and DR in patients with HNC and to enhance counseling strategies and SDM tools, aiming at reducing DC and DR.

Supplement 1.

eAppendix 1. Full Search Logbook

eAppendix 2. Additional Information on the Measurement Instruments

eReferences.

eFigure. Flow Diagram of Search and Included Studies

jamaotolaryngolheadnecksurg-e240214-s001.pdf (657.6KB, pdf)
Supplement 2.

Data Sharing Statement

jamaotolaryngolheadnecksurg-e240214-s002.pdf (17KB, pdf)

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Associated Data

This section collects any data citations, data availability statements, or supplementary materials included in this article.

Supplementary Materials

Supplement 1.

eAppendix 1. Full Search Logbook

eAppendix 2. Additional Information on the Measurement Instruments

eReferences.

eFigure. Flow Diagram of Search and Included Studies

jamaotolaryngolheadnecksurg-e240214-s001.pdf (657.6KB, pdf)
Supplement 2.

Data Sharing Statement

jamaotolaryngolheadnecksurg-e240214-s002.pdf (17KB, pdf)

Articles from JAMA Otolaryngology-- Head & Neck Surgery are provided here courtesy of American Medical Association

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