Understanding the complexities of shared decision-making in cancer: a qualitative study of the perspectives of patients undergoing colorectal surgery

Abstract

Background: Decisions leading up to surgery are fraught with uncertainty owing to trade-offs between treatment effectiveness and quality of life. Past studies on shared decision-making (SDM) have focused on the physician-patient encounter, with little emphasis on familial and cultural factors. The literature is scarce in surgical oncology, with few studies using qualitative interviews. Our objective was to explore the complexities of SDM within the setting of colorectal cancer (CRC) surgery. Methods:An interdisciplinary team developed a semistructured questionnaire. Telephone interviews were conducted with CRC patients in the practice of 1 surgical oncologist. Data saturation was achieved and a descriptive thematic analysis was performed. Results:We interviewed 20 patients before achieving data saturation. Three major themes emerged. First, family was considered as a crucial adjunct to the patientprovider dyad. Second, patients identified several facilitators to SDM, including a robust social support system and a competent surgical team. Although language was a perceived barrier, there was no difference in level of involvement in care between patients who spoke English fluently and those who did not. Finally, patients perceived a lack of choice and control in decision-making, thus challenging the very notion of SDM. Conclusion:Surgeons must learn to appreciate the role of family as a vital addition to the patient-provider dyad. Family engagement is crucial for CRC patients, particularly those undergoing surgical resection of late-stage disease. Surgeons must be aware of the uniqueness of decision-making in this context to empower patients and families.Contexte : Le choix de subir une chirurgie est toujours source d'incertitude en raison du fragile équilibre entre l'efficacité du traitement et la qualité de vie. Les études anté-rieures sur la prise de décision partagée se sont concentrées sur la relation médecin-patient; on a accordé peu d'importance aux facteurs familiaux et culturels qui entrent en jeu. En outre, la documentation scientifique ne foisonne pas d'études sur l'oncologie chirurgicale, et seules quelques données ont été recueillies au moyen d'entrevues qualitatives. Notre but était d'examiner les difficultés de la prise de déci-sion partagée dans le contexte d'une chirurgie pour un cancer colorectal.Méthodes : Une équipe interdisciplinaire a conçu un questionnaire semi-structuré au moyen duquel nous avons interviewé par téléphone des patients atteints d'un cancer colorectal et suivis par le même chirurgien oncologue. Nous avons atteint le seuil de saturation des données, puis réalisé une analyse thématique descriptive.Résultats : Pour atteindre la saturation, nous avons interrogé 20 patients. Trois thèmes principaux sont ressortis. D'abord, la famille était considérée comme un précieux ajout au tandem patient-médecin. Ensuite, les patients ont énuméré quelques éléments qui facilitent la prise de décision partagée, notamment la présence d'un bon réseau de soutien social et d'une équipe de professionne...

Patient experience of treatment decision making for wet age-related macular degeneration disease: a qualitative study in China

“…However, we found that more than half of the patients with AMD preferred to leave the final decision up to their doctors and played passive roles in treatment decision making. This fact about patients with AMD was different from patients with other diseases such as fractures20 or cancers21 22 who were willing to make decisions on their own. The main reason may be that most of the patients with AMD were older people who were limited by their physical, psychological and social functions.…”

Shared decision making in oncology: A model based on patients', health care professionals', and researchers' views

“…Others recently advocated that SDM in fact “needs to centre on the person, rather than the medical encounter.” Outside the consultation, patients can consider their options, consult others, or search for information, all as part of the SDM process. Indeed, ideas of patients' family members about treatment options may influence patients . Furthermore, cancer patients are known to search for information beyond consultations, eg, on the internet, in books, through other media, or by consulting others with experience with cancer .…”

“…Indeed, ideas of patients' family members about treatment options may influence patients. 28 Furthermore, cancer patients are known to search for information beyond consultations, eg, on the internet, in books, through other media, or by consulting others with experience with cancer. 16,[29][30][31] Our and others' 32 findings highlight the importance of including a so-called time out in cancer treatment decision making, with at least two consultations, to make important decisions.…”

The impact of surgical modality on self-reported body image, quality of life and survivorship after anterior resection for colorectal cancer – a mixed methods study

“…Upon achieving data saturation (the point at which no new information that was relevant to the research question emerged), these categories were further analyzed and refined to identify overarching themes in the attitudes, perceptions and experiences of patients. [17][18][19][20] Sociodemographic and clinical data were summarized using descriptive statistics. We compared the 3 surgical modality cohorts with respect to aggregate body image and QOL scores.…”

“…Therefore, one must remain sensitive to the unique decision-making preferences of each patient to align their expectations with known or possible postoperative outcomes. 20 It is also important to note that while QOL after rectal cancer surgery has been a topic of numerous studies, 6,8,[23][24][25][26][27][28] specific comparisons of all 3 surgical modalities and their impact on survivorship are yet to mature. In our study, surgical modality did not have a considerable impact on emotional and cognitive function, or symptom scales assessing GI function, defecation, psychological symptoms and pain.…”