Trust and shared decision‐making among individuals with multiple myeloma: A qualitative study

Whitney, Robin L.; White, Anne Elizabeth Clark; Rosenberg, Aaron S; Kravitz, Richard L.; Kim, Katherine

doi:10.1002/cam4.4322

Cited by 22 publications

(17 citation statements)

References 34 publications

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“…Most families in the study had positive attitudes and experiences with their GPs, including the ability to trust, have open and honest conversations, and being made aware of important information regarding their child’s health, which would all lead to greater awareness and confidence, and thereby improving their overall healthcare experience and well-being. This was indeed affirmed by several previous studies, which had shown that building trust and rapport in doctor–patient relationships through open communication, patient engagement and shared decision-making mitigates patients’ feelings of anxiety and vulnerability, thus improving their overall healthcare experience 33 34…”

Section: Discussionmentioning

confidence: 54%

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Parental experience of an early developmental surveillance programme for autism within Australian general practice: a qualitative study

et al. 2022

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ObjectivesImplementing support and services early in the life course has been shown to promote positive developmental outcomes for children at high likelihood of developmental conditions including autism. This study examined parents’/caregivers’ experiences and perceptions about a digital developmental surveillance pathway for autism, the autism surveillance pathway (ASP), and usual care, the surveillance as usual (SaU) pathway, in the primary healthcare general practice setting.DesignThis qualitative study involves using a convenience selection process of the full sample of parents/caregivers that participated in the main programme, ‘General Practice Surveillance for Autism’, a cluster-randomised controlled trial study. All interviews were audio-recorded, transcribed and coded using NVivo V.12 software. An inductive thematic interpretive approach was adopted and data were analysed thematically.ParticipantsTwelve parents/caregivers of children with or without a developmental condition/autism (who participated in the main programme) in South Western Sydney and Melbourne were interviewed.SettingsAll interviews were completed over the phone.ResultsThere were seven major themes and 20 subthemes that included positive experiences, such as pre-existing patient–doctor relationships and their perceptions on the importance of knowing and accessing early support/services. Barriers or challenges experienced while using the SaU pathway included long waiting periods, poor communication and lack of action plans, complexity associated with navigating the healthcare system and lack of understanding by general practitioners (GPs). Common suggestions for improvement included greater awareness/education for parents/carers and the availability of accessible resources on child development for parents/caregivers.ConclusionThe findings support the use of digital screening tools for developmental surveillance, including for autism, using opportunistic contacts in the general practice setting.Trial registration numberANZCTR (ACTRN12619001200178).

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Section: Discussionmentioning

confidence: 54%

“…This was indeed affirmed by several previous studies, which had shown that building trust and rapport in doctor–patient relationships through open communication, patient engagement and shared decision-making mitigates patients’ feelings of anxiety and vulnerability, thus improving their overall healthcare experience. 33 34 …”

Section: Discussionmentioning

confidence: 99%

Parental experience of an early developmental surveillance programme for autism within Australian general practice: a qualitative study

et al. 2022

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“…47,48 Trust can be built through empathetic, active listening by the physician, encouraging questions, providing detailed explanations of imaging and laboratory results, avoiding judgmental behaviors, and seeking to understand the patient's goals and expectations for treatment. [47][48][49] Additionally, incongruency between first and second opinions was identified to impact patient trust in their physicians; however, further research is required to better understand this phenomenon.…”

Section: Discussionmentioning

confidence: 99%

Factors Important to Patients when Making Treatment Decisions for Knee Osteoarthritis

2023

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Patient treatment decisions for knee osteoarthritis (OA) are driven largely by the patient's physical examination and radiograph findings. Because multiple treatment options may be medically appropriate, it is imperative that the patient's voice be considered to better facilitate patient-centered treatment decisions. Concordance between physicians and patients on optimal treatment can vary, with few studies identifying the factors important to patients when making treatment decisions for knee OA. The goal of this analysis is to identify and synthesize subjective factors in the literature found to influence patient decision-making in a presurgical knee OA population, such that physicians and health care teams can become better equipped to help patients realize their specific treatment goals. This review was registered with PROSPERO and conducted following the Preferred Reporting Items for Systematic Reviews and Meta-Analyses protocol. A systematic search was completed in four databases for search terms related to knee OA and decision-making. Articles were eligible for inclusion when they discussed (1) patients' thoughts, feelings, goals, and perceptions that factored into treatment deliberation and decision-making; and (2) related to knee OA. Twenty-four articles were identified, 11 qualitative studies and 13 quantitative studies. Synthesis of the included articles revealed three main themes that drive patient treatment decisions: (1) individual catalysts to pursue treatment including pain and mobility limitations, (2) interpersonal factors including social networks and clinician trust, and (3) risks versus benefits assessment including patients' beliefs and expectations. Only a few studies looked at nonoperative treatment decisions, and no studies looked at cohorts considering knee preservation surgeries. This study was completed to synthesize literature related to patient treatment decisions for nonoperative and surgical management of knee OA, finding that patients consider multiple subjective factors when choosing whether to move forward with treatment. Understanding how patients' beliefs determine their preferences for treatment can improve shared decision-making.

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“…Because of the trust and support patients had in their physicians, they were able to engage in discussions of future focused treatment of MM, though they had preferences to not follow guidelines at the present time. The long-term and incurable nature of MM have an influence on the perspective on and the decisions surrounding standards of care [ 26 ]. There is an understanding of and anticipation of the treatment process being long itself and being lifelong, and intentionally not following guidelines at present provides patients and physicians with choices in the future.…”

Section: Discussionmentioning

confidence: 99%

What Affects Treatment Underuse in Multiple Myeloma in the United States: A Qualitative Study

Cytryn

Bickell

Yagnik

et al. 2023

Cancers

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Background: Multiple myeloma (MM) is the second most common hematologic malignancy. African Americans are more likely than Whites to be diagnosed with and die of MM, but they experience the same survival times in clinical trials, suggesting that differences in survival may be attributed to differences in receipt of treatment or differences in access to new treatments. We undertook this study to identify the reasons and needs underlying disparities in treatment among patients diagnosed with MM. Methods: We conducted in-depth interviews in 2019–2020 with patients diagnosed with MM between 2010 and 2014 who were identified as eligible for transplant and maintenance therapy and having experienced delays in or underuse of treatment for MM. Underuse was defined as the lack of a particular treatment that the patient was eligible to receive, not being transplanted if eligible, and/or not receiving maintenance therapy. Underuse included patients’ decision to delay harvest or autologous stem cell transplant (ASCT) for the time being and return to the decision in the future. All interviews were audio-recorded and transcribed verbatim. Four investigators independently coded transcripts through inductive analysis to assess reasons for treatment decisions. Results: Of the 29 patients interviewed, 68% experienced treatment underuse: 21% self-identified as African American, 5% as Hispanic, 10% as mixed race, 57% as White, and 16% as Asian. There were no racial differences in reasons for underuse or delay. Themes relating to treatment underuse included: perceived pros and cons of treatment, including potential harm or lack thereof in delaying treatment; physician recommendations; and personal agency. Conclusion: Patients’ decision making, delays, and underuse of MM treatment are influenced by social, personal, medical, and contextual factors. Patients consider their relationship with their physician to be one of the most significant driving forces in their decisions and treatment plans.

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Trust and shared decision‐making among individuals with multiple myeloma: A qualitative study

Cited by 22 publications

References 34 publications

Parental experience of an early developmental surveillance programme for autism within Australian general practice: a qualitative study

Parental experience of an early developmental surveillance programme for autism within Australian general practice: a qualitative study

Factors Important to Patients when Making Treatment Decisions for Knee Osteoarthritis

What Affects Treatment Underuse in Multiple Myeloma in the United States: A Qualitative Study

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