Treatment decision-making in ductal carcinoma in situ: A mixed methods systematic review of women’s experiences and information needs

ObjectiveDecision-making in ductal carcinoma in situ (DCIS) is complex due to the heterogeneity of the disease. This study aimed to understand women’s experience of making treatment decisions for DCIS, their information and support needs, and factors that influenced decisions.MethodsWe searched six electronic databases, conference proceedings, and key authors. Two reviewers independently applied inclusion and quality criteria, and extracted findings. Thematic analysis was used to combine and summarise findings.ResultsWe identified six themes and 28 subthemes from 18 studies. Women with DCIS have knowledge deficits about DCIS, experience anxiety related to information given at diagnosis and the complexity of decision-making, and have misconceptions regarding risks and outcomes of treatment. Women’s decisions are influenced by their understanding of risk, the clinical features of their DCIS, and the benefits and harms of treatment options. Women are dissatisfied with the decisional support available.ConclusionsInformed and shared decision-making in this complex decision setting requires clear communication of information specific to DCIS and individual’s, as well as decision support for patients and clinicians.Practice implicationsThis approach would educate patients and clinicians, and assist clinicians in supporting patients to an evidence-based treatment plan that aligns with individual values and pReferences     

Preferences of advanced lung cancer patients for patient-centred information and decision-making: A prospective multicentre study in 13 hospitals in Belgium

ObjectiveTo identify preferences of advanced lung cancer patients for receiving information and participating in decision-making concerning treatment options, health-care-setting transfers and end-of-life decision-making.MethodsOver the course of 1 year, pulmonologists and oncologists in 13 hospitals in Flanders, Belgium, invited patients with an initial diagnosis of non-small-cell lung cancer IIIb/IV to participate in the study. Shortly after inclusion, the patients were interviewed with a structured questionnaire.ResultsOne-hundred and twenty-eight patients with a median estimated survival time of 10 months participated. Almost all wanted information on diagnosis, treatment and cure rate and slightly fewer on life expectancy (88.2%). Information about palliative care was desired by 63.5% of patients and information about end-of-life decisions by 56.8%. The percentage of patients who preferred personal control over medical decision-making increased to 14.8% for treatment, 25.0% for transfer and 49.2% for end-of-life decisions, all of which were higher than for medical decisions in general (9.3%).ConclusionInformation and participation preferences of advanced lung cancer patients differ depending on the type of information or decision.Practice implicationsAs part of a patient-centred approach, physicians should not only check the general but also the specific information and participation preferences of their patients.     

How patients deal with an ambiguous medical test: Decision-making after genetic testing

ObjectiveWe know little about how patients make decisions when they receive a variant of uncertain significance result (VUS) from genetic testing. The purpose of this study was to elucidate a model of patient-informed decision-making after receiving a VUS result.MethodsUsing an adapted Mental Models Approach, we conducted semi-structured interviews with women who received a VUS result from genetic testing for hereditary breast cancer (N = 20) to explore factors they believed were relevant to their decision-making. Two coders used a coding scheme informed by experts in hereditary breast cancer to conduct analysis. Inter-coder reliability was α = .86.ResultsThree overarching decision themes emerged from the interviews: managing ambiguity, medical risk management, and sharing results with others. While participants noted some difficulty understanding their result, genetic counselors’ interpretations, psychosocial factors (e.g., risk perceptions), and competing extrinsic demands influenced their decisions.ConclusionComplex influences affect patient decision-making after a VUS result from genetic testing and may encourage health protective behavior.Practice ImplicationsEven patients who understand their test result could use support managing the ambiguity of their test result and sharing it with others.     

Treatment decision-making in chronic diseases: What are the family members’ roles,needs and attitudes? A systematic review

ObjectiveThis systematic review aims to examine the roles of family members (FMs) in treatment decision-making for adult patients without cognitive or psychiatric disorders affecting their ability to participate in decision-making.MethodologyA comprehensive, systematic search of the Cochrane Library, PsycINFO, PubMed and ScienceDirect databases, with relevant keywords, was conducted. Two authors evaluated the eligibility of the studies independently, then cross-checked for accuracy. The quality of included studies were assessed using standardized criteria.ResultsOut of the 12.137 studies identified, 40 were included. Results highlighted the different roles and influences FMs have in the decision-making process. Moreover, several factors ranging from personal to cultural and family-related factors influence their level of involvement. Regardless of the illness, some similarities in family influence exist (e.g., social support). However, the type of family involvement varies according to the illness, the treatment choice and the patients’ culture.ConclusionFMs have an important role in the decision-making process. In fact, the final decision is often made by the patients after consulting their families. FMs can support both patients and medical teams, and thus facilitate the process.Practice implicationsPhysicians should include FMs in treatment decision-making when the patients and their FMs wish to be included.     

The experiences and perspectives of family surrogate decision-makers: A systematic review of qualitative studies

ObjectiveSurrogate decision-makers play an increasingly important role in the lives of older adults who have lost their ability to make decisions. Currently, there is a lack of evidence to support family surrogates in making a variety of decisions. Additionally, a greater understanding of family caregivers’ experiences and perspectives toward making surrogate decisions is needed.MethodsThis study employed a qualitative systematic review and thematic synthesis of the research evidence using the methodologies of the Joanna Briggs Institute (2014) and Thomas and Harden (2008).ResultsDecisions were classified per three main types: intensive care treatment, end-of-life treatment, and placement. Six themes were identified concerning surrogates’ experiences: struggle and reluctance, seeking reassurance, communication with healthcare professionals, family support, older adults’ wishes, and negative impact.ConclusionFamily surrogates often lack adequate preparation and education regarding decision-making. Quality communication between surrogates and healthcare providers helps reduce the anxiety and guilt experienced when making surrogate decisions. Further research is required to elucidate these experiences with more cultural and racial nuances.Practice implicationsThis review informs healthcare providers’ awareness of the challenges faced by surrogates and fosters improved surrogate decision-making experiences.     

Involving patients and their families in deciding to use next generation sequencing: Results from a nationally representative survey of U.S. oncologists

ObjectiveNext generation sequencing (NGS) may aid in tumor classification and treatment. Barriers to shared decision-making may influence use of NGS. We examined, from oncologists’ perspectives, whether barriers to involving patients/families in decision-making were associated with NGS use.MethodsUsing data from the first national survey of medical oncologists’ perspectives on precision medicine (N = 1281), we approached our analyses in two phases. Bivariate analyses initially evaluated associations between barriers to involving patients/families in deciding to use NGS and provider- and organizational-level characteristics. Modified Poisson regressions then examined associations between patient/family barriers and NGS use.ResultsApproximately 59 % of oncologists reported at least one barrier to involving patients/families in decision-making regarding NGS use. Those reporting patient/family barriers tended to have fewer genomic resources at their practices, to be in rural or suburban areas, and to have a higher proportion of Medicaid patients. However, these barriers were not associated with NGS use.ConclusionsOncologists encounter barriers to involving patients/families in NGS testing decisions. Organizational barriers may also potentially play a role in testing decisions.Practice implicationsTo foster patient-centered care, strategies to support patient involvement in genomic testing decisions are needed, particularly among practices in low-resource settings.     

Breaking the sound barrier: exploring parents’ decision-making process of cochlear implants for their children

ObjectiveTo understand the dynamic experiences of parents undergoing the decision-making process regarding cochlear implants for their child(ren).MethodsThirty-three parents of d/Deaf children participated in semi-structured interviews. Interviews were digitally recorded, transcribed, and coded using iterative and thematic coding.ResultsThe results from this study reveal four salient topics related to parents’ decision-making process regarding cochlear implantation: 1) factors parents considered when making the decision to get the cochlear implant for their child (e.g., desire to acculturate child into one community), 2) the extent to which parents’ communities influence their decision-making (e.g., norms), 3) information sources parents seek and value when decision-making (e.g., parents value other parent's experiences the most compared to medical or online sources), and 4) personal experiences with stigma affecting their decision to not get the cochlear implant for their child.ConclusionThis study provides insights into values and perspectives that can be utilized to improve informed decision-making, when making risky medical decisions with long-term implications.Practical implicationsWith thorough information provisions, delineation of addressing parents’ concerns and encompassing all aspects of the decision (i.e., medical, social and cultural), health professional teams could reduce the uncertainty and anxiety for parents in this decision-making process for cochlear implantation.     

The influence of online health information on health decisions: A systematic review

ObjectivesThis systematic review assessed the influence of online health information (OHI) search behaviour on health and medical decisions.MethodsEligible studies were identified by searching electronic databases PubMed, Scopus, and CINAHL in February 2020 for studies reporting OHI search behaviour and its influence on health decisions. Information was extracted pertaining to either consumers’ (self-reported) perceptions of the influence of OHI on decision-making or the association between online search behaviour and health decision-making.ResultsA total of 3995 articles were screened, with 48 included in the final analysis. The reviewed studies indicated that OHI assisted in making subsequent health related decisions such as asking questions during a consultation, increased professional visits, improved adherence to the advice of a physician, being more compliant with taking medication, and improved self-care.ConclusionConsumers largely used OHI to support information provided by their physicians. The strength of the patient-provider relationship was considered important in moderating the potential negative outcomes of OHI.Practice implicationsHealth care systems have a unique opportunity to direct OHI search behaviours towards empowering consumers to engage as an informed, active and joint decision-maker in their own health care.     

A special kind of stress: Assessing feelings of decisional distress for breast cancer treatment decisions

ObjectiveWomen with breast cancer need to make difficult treatment decisions and may experience decisional distress (worry, anxiety, and thought intrusion) associated with these decisions. This study investigated ways that decisional distress was both associated with and distinct from other variables regarding decisional process and life functioning, and it investigated the validity of a decisional distress scale.MethodsA total of 263 women previously or currently diagnosed with breast cancer reported on initial treatment decisions regarding surgery, chemotherapy, or radiation, or decisions involving oral endocrine therapy (either currently or retrospectively). Participants completed online measures of decisional distress, alliance and confusion in patient-practitioner relationships, positive and negative interactions in close relationships, financial and general distress, and decision satisfaction.ResultsDecisional distress demonstrated a unidimensional factor structure invariant across treatment context groups, a wide range of meaningful variation, significant correlations with all hypothesized variables (especially patient confusion), but also key distinctions from other variables.ConclusionDecisional distress is a meaningful construct that can be assessed with precision, and important for understanding medical decision-making processes and patient quality of life.Practice implicationsAssessing decisional distress is crucial for evaluating treatment decision outcomes. One key to reducing decisional distress may involve reducing patient confusion.     

Black and Minority Ethnic women's decision-making for risk reduction strategies after BRCA testing: Use of context and knowledge

Within the field of breast cancer care, women concerned about their family history are offered genetic testing and subsequent treatment options based on several factors which include but are not limited to personal and family cancer disease histories and clinical guidelines. Discussions around decision-making in genetics in Black and Minority Ethnic (BME) groups are rarely documented in literature, and information regarding interactions with genetics services is usually discussed and linked to lack of scientific knowledge. As such, counselling sessions based only on scientific and medical information miss out the many reasons participants consider in making health decisions, information which can be used to encourage BME women to engage in cancer genetics services. 10 BME women with a mixed personal and family history of breast and ovarian cancer backgrounds, were interviewed in a study exploring issues of knowledge about familial breast cancer syndromes, to understand how they created and used familial knowledge for health decisions, with a particular focus on attitudes towards risk reducing strategies.Study results show that our participants are not unique in the ways they make decisions towards the use of cancer genetics and risk reduction strategies and as such, there are no specific ethnically defined pathways for decision-making. Our participants demonstrated mixed biomedical, social and individual cultural reasons for their decision-making towards risk reduction surgeries and treatment options which are similar to women from different ethnicities and are individual rather than group-specific. Narratives about suspicion of scientific utility of genetic knowledge, the perceived predictive value of mutations for future cancers or the origin of mutations and family disease patterns feature heavily in how participants evaluated genetic information and treatment decisions. The diversity of results shows that our participants are interested in engaging with genetic information but use multiple sources for evaluating the extent of involvement in genetic services and the place of genetic information and treatment options for themselves and their families. Genetic information is considered within various bio-social scenarios before decision-making for risk reduction is undertaken. BME women are shown to undertake evaluative processes which clinicians are encouraged to explore for better patient support. Continuing to focus on links between superficial and un-representative meanings of ethnicity, ethnic identity and attitudes and behaviours by only searching for differences between ethnic groups, are unhelpful in further understanding how women from those diverse backgrounds make decisions towards risk reduction interventions. Future research must find ways of investigating and understanding populations in ways that are not focussed solely on ethnic differences but on how meaning is created out of social circumstances and experiences.     

Robot or radiation? A qualitative study of the decision support needs of men with localised prostate cancer choosing between robotic prostatectomy and radiotherapy treatment

ObjectiveTo understand how best to support men diagnosed with localised prostate cancer to decide which treatment option best suits their needs, when robotic prostatectomy and radiotherapy are equally appropriate to offer them.MethodsTwenty-five men recently diagnosed with localised prostate cancer completed semi-structured interviews asking about information/decision-making needs before and/or after attending a combined clinic in which they consulted a urologist and a radiation oncologist regarding treatment options. Data was transcribed verbatim and thematically analysed.ResultsMost men preferred robotic prostatectomy pre-combined clinic and chose it afterwards. The thematic analysis revealed four themes: 1) trust in clinicians and the information they provide is critical for treatment choice, 2) perceived fit between treatment characteristics and personal circumstances, 3) additional considerations: specific side effects, socio-emotional and financial factors, and 4) need for tailored information delivery. Robotic prostatectomy was mistakenly believed to provide a more definitive cure than radiotherapy, which was seen as having a lesser lifestyle impact.ConclusionsTreatment choice is largely dependent on clinicians’ (mainly urologists’) recommendations.Practice implicationsPatients need more balanced information about alternatives to robotic prostatectomy earlier in the treatment decision-making process. Referral to a radiation oncologist or combined clinic shortly after diagnosis is recommended.     

Illness representations and coping practices for self-managing hypertension among sub-Saharan Africans: A comparative study among Ghanaian migrants and non-migrant Ghanaians

ObjectiveHypertension (HTN) control is a major obstacle among sub-Saharan African populations partly due to poor self-management. We explored and compared how persons’ social and physical context shapes their illness representations regarding HTN and the coping strategies they develop and adapt to mitigate challenges in self-managing HTN.MethodsA cross sectional multisite qualitative study using semi-structured interviews among 55 Ghanaians with HTN living in The Netherlands and urban and rural Ghana. A thematic approach was used in data analysis.ResultsFamily HTN history, personal experiences with HTN and outcomes of using biomedical and traditional treatments shaped participants’ illness representations and coping strategies. Migrants and urban non-migrants modified medication schedules and integrated taking medication into daily routine activities to cope with experienced side effects of taking antihypertensive medication while rural non-migrants used traditional remedies and medicines to mitigate experienced medication side effects and/or in search for a cure for HTN.ConclusionContextual factors within participants’ social and physical environments shape their illness representations and coping strategies for HTN though interactive phrases.Practice implicationsHealth professionals should harness the relationships within peoples’ social and physical environments, encourage implementation of family-wide behavioural changes and involve family and communities in HTN treatment to enhance patients’ self-management of HTN.     

Clinical utility of gene-expression profiling in women with early breast cancer: an overview of systematic reviews

PurposeThis overview systematically evaluates the clinical utility of using Oncotype DX and MammaPrint gene-expression profiling tests to direct treatment decisions in women with breast cancer. The findings are intended to inform an updated recommendation from the Evaluation of Genomic Applications in Practice and Prevention Working Group.MethodsEvidence reported in systematic reviews evaluating the clinical utility of Oncotype DX and MammaPrint, as well as the ability to predict treatment outcomes, change in treatment decisions, and cost-effectiveness, was qualitatively synthesized.ResultsFive systematic reviews found no direct evidence of clinical utility for either test. Indirect evidence showed Oncotype DX was able to predict treatment effects of adjuvant chemotherapy, whereas no evidence of predictive value was found for MammaPrint. Both tests influenced a change in treatment recommendations in 21 to 74% of participants. The cost-effectiveness of Oncotype DX varied with the alternative compared. For MammaPrint, lack of evidence of the predictive value led to uncertainty in the cost-effectiveness.ConclusionNo studies were identified that provided direct evidence that using gene-expression profiling tests to direct treatment decisions improved outcomes in women with breast cancer. Three ongoing studies may provide direct evidence for determining the clinical utility of gene-expression profiling testing.Genet Med 17 7, 519–532.     

Making shared decisions in relation to planned caesarean sections: What are we up to?

ObjectiveTo map the literature in relation to shared decision making (SDM) for planned caesarean section (CS), particularly women’s experiences in receiving the information they need to make informed decisions, their knowledge of the risks and benefits of CS, the experiences and attitudes of clinicians in relation to SDM, and interventions that support women to make informed decisions.MethodsUsing a scoping review methodology, quantitative and qualitative evidence was systematically considered. To identify studies, PubMed, Maternity and Infant Care, MEDLINE, and Web of Science were searched for the period from 2008 to 2018.Results34 studies were included, with 9750 women and 3313 clinicians. Overall women reported limited SDM, and many did not have the information required to make informed decisions. Clinicians generally agreed with SDM, while recognising it often does not occur. Decision aids and educational interventions were viewed positively by women.ConclusionMany women were not actively involved in decision-making. Decision aids show promise as a SDM-enhancing tool. Studies that included clinicians suggest uncertainty regarding SDM, although willingness to engage.Practice implications: Moving from clinician-led decision-making to SDM for CS has potential to improve patient experiences, however this will require considerable clinician training, and implementation of SDM interventions.     

A systematic review of factors influencing decision-making in adults living with chronic kidney disease

Objective

To identify factors influencing patient involvement in decision-making in the context of chronic kidney disease (CKD) and effective interventions to support their decision-making needs.

Methods

A systematic review included studies and decision support tools that involved: (1) adults with CKD, (2) studies published from 1998–2008; and (3) a focus on patient decision-making needs, and/or barriers and facilitators to shared decision-making. Studies were quality appraised.

Results

Forty studies were appraised. These studies mainly focused on the decisions patients with CKD faced around the choice of renal replacement therapy and withholding/withdrawing dialysis. Moreover, studies typically focused on health care professional's provision of information about the decision rather than identifying decisional conflict and supporting patients in decision-making. No studies were found that identified the patient's point of view about factors that might influence or inhibit quality decision-making. Factors influencing CKD patient's participation in decision included: (1) interpersonal relationships; (2) preservation of current well being, normality and quality of life; (3) need for control; and (4) personal importance on benefits and risks. Of the four patient decision aids identified, none had been evaluated for effectiveness.

Conclusion

Patients with CKD face decisions that are likely to cause decisional conflict. Most studies focused on information needs related to renal replacement therapy and withdrawing or withholding dialysis. There was less focus on other decision-making needs in the context of those choices and across the trajectory of CKD. Although patient decision aids and implementation of shared decision-making have been evaluated in patients with other medical conditions, little is known about interventions to support patients with CKD making quality decisions.

Practice implications

Patients with CKD have decision-making needs across the trajectory of their illness. Although little is known about supporting patients with CKD decision-making, support could be provided with protocols and tools that have been developed for other chronic illness situations. Development of CKD-specific clinical practice guidelines that include decision support best practices could benefit CKD patients. Research priorities include development and evaluation of CKD focused decision support tools and processes.     

The difficulties of broad data sharing in genomic medicine: Empirical evidence from diverse participants in prenatal and pediatric clinical genomics research

PurposeThis study aimed to understand broad data sharing decisions among predominantly underserved families participating in genomic research.MethodsDrawing on clinic observations, semistructured interviews, and survey data from prenatal and pediatric families enrolled in a genomic medicine study focused on historically underserved and underrepresented populations, this paper expands empirical evidence regarding genomic data sharing communication and decision-making.ResultsOne-third of parents declined to share family data, and pediatric participants were significantly more likely to decline than prenatal participants. The pediatric population was significantly more socioeconomically disadvantaged and more likely to require interpreters. Opt-in was tied to altruism and participants’ perception that data sharing was inherent to research participation. Opt-out was associated with privacy concerns and influenced by clinical staff’s presentation of data handling procedures. The ability of participants to make informed choices during enrollment about data sharing was weakened by suboptimal circumstances, which was revealed by poor understanding of data sharing in follow-up interviews as well as discrepancies between expressed participant desires and official recorded choices.ConclusionThese empirical data suggest that the context within which informed consent process is conducted in clinical genomics may be inadequate for respecting participants’ values and preferences and does not support informed decision-making processes.     

Patient involvement in micro-decisions in intensive care

ObjectiveThe objective of this study was to explore how bedside micro-decisions were made between conscious patients on mechanical ventilation in intensive care and their healthcare providers.MethodsUsing video recordings to collect data, we explored micro-decisions between 10 mechanically ventilated patients and 60 providers in interactions at the bedside. We first identified the types of micro-decisions before using an interpretative approach to analyze the decision-making processes and create prominent themes.ResultsWe identified six types of bedside micro-decisions; non-invited, substituted, guided, invited, shared and self-determined decisions. Three themes were identified in the decision-making processes: 1) being an observer versus a participant in treatment and care, 2) negotiating decisions about individualized care (such as tracheal suctioning or medication),and 3) balancing empowering activities with the need for energy restoration.ConclusionThis study revealed that bedside decision-making processes in intensive care were characterized by a high degree of variability between and within patients. Communication barriers influenced patients’ ability to express their preferences. An increased understanding of how micro-decisions occur with non-vocal patients is needed to strengthen patient participation.Practice ImplicationsWe advise providers to make an effort to solicit patients’ preferences when caring for critically ill patients.     

Patient perceptions of trust formation in the surgeon-patient relationship: A thematic analysis

ObjectiveTrust is crucial to the success of any personal or professional relationship. Literature on trust in the surgeon-patient relationship has been largely explored through quantitative methodologies, primarily examining why trust may or may not exist. We aimed to qualitatively elucidate the mechanisms of how trust develops between otolaryngologists and their patients.MethodsPatients were recruited by surgery scheduling staff following an outpatient visit where a decision had been made to proceed with surgery at a tertiary academic medical center. We used qualitative realist thematic analysis of phone interviews to explore participants’ (n = 17) perceptions and conceptualization of trust formation within the surgeon-patient relationship.ResultsThematic analysis revealed three themes regarding trust formation in the surgeon-patient relationship: 1) Trust Across Various Contexts; 2) Impact of Prior Knowledge; and 3) Interpersonal Connection during the Clinical Encounter.ConclusionAn interpersonal surgeon-patient connection is crucial to the formation of trust. Trust is also influenced by surgeon and institutional reputation and witnessed surgeon interactions with the healthcare team.Practice ImplicationsPatients perceive trust in a surgeon as carrying unique importance. To optimize conditions for trust development in this context, surgical care paradigms should promote meaningful preoperative interpersonal surgeon-patient relationships and positive surgeon and institutional reputations.