Involvement In Treatment Decisions Research Articles

"Often Relatives are the Key […]" -Family Involvement in Treatment Decision Making in Patients with Advanced Cancer Near the End of Life.

BackgroundFamily communication has been increasingly recognized as an important factor in decision making near the end of life. However, the role of the family in decision making is less studied in oncology settings, where most patients are conscious and able to communicate almost until dying. The aim of this study was to explore oncologists’ and nurses’ perceptions of family involvement in decision making about forgoing cancer‐specific treatment in patients with advanced cancer.Materials and MethodsQualitative semistructured interviews with 22 oncologists and 7 oncology nurses were analyzed according to the grounded theory approach. The results were discussed against the background of the clinical and ethical debate on family role near the end of life.ResultsWe could identify two approaches shared by both oncologists and nurses toward family involvement. These approaches could be partly explained by different perception and definition of the concept of patients' autonomy: (a) a patient‐focused approach in which a patient's independence in decision making was the highest priority for oncologists and (b) a mediator approach with a family focus in which oncologists and nurses assigned an active role to patients' family in decision making and strived for building consensus and resolving conflicts.ConclusionThe main challenge was to involve family, increasing their positive influences on the patient and avoiding a negative one. Thereby, the task of both oncologists and oncology nurses is to support a patient's family in understanding of a patient's incurable condition and to identify a patient's preference for therapy.Implications for PracticeThis study focused on oncologists’ and oncology nurses’ perceptions of family involvement in decision making about treatment limitation in patients with advanced cancer who are able to communicate in a hospital setting. Oncologists and oncology nurses should be aware of both positive aspects and challenges of family involvement. Positive aspects are patients’ emotional support and support in understanding and managing the information regarding treatment decisions. Challenges are diverging family preferences with regard to treatment goals that might become a barrier to advanced care planning, a possible increased psychological burden for the family. Especially challenging is involving the family of a young patient because increased attention, more time investment, and detailed discussions are needed.

The role of hospital nurses in shared decision-making about life-prolonging treatment: A qualitative interview study.

AimsTo examine hospital nurses’ perception of their actual and potential contribution to shared decision‐making about life‐prolonging treatment and their perception of the pre‐conditions for such a contribution.DesignA qualitative interview study.MethodsSemi‐structured face‐to‐face interviews were conducted with 18 hospital nurses who were involved in care for patients with life‐threatening illnesses. Data were collected from October 2018‐January 2019. The interviews were recorded, transcribed verbatim and analysed using thematic analysis by two researchers.ResultsNurses experienced varying degrees of influence on decision‐making about life‐prolonging treatment. Besides, we identified different points of contact in the treatment trajectory at which nurses could be involved in treatment decision‐making. Nurses’ descriptions of behaviours that potentially contribute to shared decision‐making were classified into three roles as follows: checking the quality of a decision, complementing shared decision‐making and facilitating shared decision‐making. Pre‐conditions for fulfilling the roles identified in this study were: (a) the transfer of information among nurses and between nurses and other healthcare professionals; (b) a culture where there is a positive attitude to nurses' involvement in decision‐making; (c) a good relationship with physicians; (d) knowledge and skills; (e) sufficient time; and (f) a good relationship with patients.ConclusionNurses described behaviour that reflected a supporting role in shared decision‐making about patients’ life‐prolonging treatment, although not all nurses experienced this involvement as such. Nurses can enhance the shared decision‐making process by checking the decision quality and by complementing and facilitating shared decision‐making.ImpactNurses are increasingly considered instrumental in the shared decision‐making process. To facilitate their contribution, future research should focus on the possible impact of nurses’ involvement in treatment decision‐making and on evidence‐based training to raise awareness and offer guidance for nurses on how to adopt this role.

The Balance of Patient Involvement: Patients' and Health Professionals' Perspectives on Decision-Making in the Treatment of Advanced Prostate Cancer.

Research has shown that involving patients in decisions on treatment may have positive effects for patients. However, there are different understandings of what involving patients implies and different attitudes among physicians toward sharing decisions with patients. This study aimed to explore the attitude of patients with advanced prostate cancer to involvement in treatment decisions and physicians' and nurses' approach to patient involvement. Moreover, it aimed to explore whether the decision-making changes as the treatment course progresses. Data were collected through participant observations and interviews. It was found that treatment decisions are primarily considered as part of physicians' role. Physicians' attitudes to patient involvement in treatment decisions depended on the type of treatment. Among patients and health professionals, there was a lack of confidence in the ability of patients to participate in the decisions. Health professionals and patients have different attitudes toward patient involvement and different views on what it entails.

Patient–Physician Alignment in Satisfaction With Psoriatic Arthritis Treatment: Analysis From a Cross-Sectional Survey in the United States and Europe

Background: There is evidence that patients and physicians are frequently misaligned in their perspectives on psoriatic arthritis (PsA) treatment priorities, which may be associated with increased disease activity, greater disability, and poorer health-related quality of life of PsA patients. Objective: To identify factors associated with patient–physician misalignment in satisfaction with PsA disease control. Methods: In a cross-sectional survey of physicians and their patients with PsA from the United States and Europe, satisfaction with disease control was examined and classified as satisfied, neutral, or dissatisfied. Bivariate and multivariate regression analyses explored alignment in satisfaction between physicians and patients. Results: There were 656 PsA patient–physician pairs included in the analysis. Misalignment occurred in 20.6% of cases. Greater disease impact, worse physician-reported disease severity, and lower patient-reported involvement in treatment decisions were associated with misalignment. Conclusion: Greater patient–physician engagement may improve satisfaction, alignment, and outcomes in PsA disease control.

240P A multinational real-world study on HR+, HER2- early stage breast cancer patients' disease awareness, satisfaction, and involvement in treatment decisions

240P A multinational real-world study on HR+, HER2- early stage breast cancer patients' disease awareness, satisfaction, and involvement in treatment decisions

Real-world data and patient perspectives on quality care and maintenance therapy (MT) decision-making for recurrent ovarian cancer (ROC).

e19174 Background: Despite clinical evidence illustrating the efficacy of MT for ROC, complexities, such as patient-, treatment-, and disease-related factors, and team-based care coordination, limit its optimal use in ROC. In a quality improvement (QI) program, conducted at 2 oncology systems, we evaluated gaps in evidence-based, quality ROC care. Methods: Between 09/2019-02/2020, retrospective EMR audits of 200 patients with ovarian cancer were analyzed for demographics, disease characteristics, treatment history, and shared decision-making (SDM) involving MT. Surveys were administered to evaluate challenges, barriers and experiences of healthcare professionals (HCP; N = 35) and their patients with ROC (N = 21). The HCP teams participated in audit-feedback sessions and developed action plans for resolving identified gaps. Results: EMR audits revealed low utility of MT among patients with ROC (Table), and only 20% of patients reported that MT was discussed as a treatment option. Lack of access to newer therapies was most commonly identified (27%) by HCP as the biggest challenge in treating patients with ROC. Furthermore, survey results revealed that HCP are challenged to correctly integrate guidelines for patient selection for PARP inhibitor MT based on BRCA mutation status (18% of HCP answered correctly), response to previous chemotherapy (49% correct), and line of therapy (46% correct). Data indicated a low level of SDM – none of the patients indicated a high level involvement in treatment decisions and only 20% indicated a high level of agreement that their care team understood their treatment goals. EMR audits also illustrate low documentation of multiple aspects of SDM (Table). Oncology team members formulated plans to develop guidance documents to assist in therapy sequencing and tools to improve patient education. Conclusions: Overall, data from this QI program indicate gaps, challenges, and barriers in evidence-based, MT decision-making and engagement of patients in SDM. These areas for improvement may be relevant for future interventions to improve the provision of quality ROC care. [Table: see text]

Cancer patients’ preferred and perceived level of involvement in treatment decision-making: an epidemiological study

Background: We aimed to analyze preferred and perceived levels of patients’ involvement in treatment decision-making in a representative sample of cancer patients.Material and Methods: We conducted a multicenter, epidemiological cross-sectional study with a stratified random sample based on the incidence of cancer diagnoses in Germany. Data were collected between January 2008 and December 2010. Analyses were undertaken between 2017 and 2019. We included 5889 adult cancer patients across all cancer entities and disease stages from 30 acute care hospitals, outpatient facilities, and cancer rehabilitation clinics in five regions in Germany. We used the Control Preferences Scale to assess the preferred level of involvement and the nine-item Shared Decision-Making Questionnaire to assess the perceived level of involvement.Results: About 4020 patients (mean age of 58 years, 51% female) completed the survey. Response rate was 68.3%. About a third each preferred patient-led, shared, or physician-led decision-making. About 50.7% perceived high levels, about a quarter each reported moderate (26.0%) or low (24.3%) levels of shared decision-making. Sex, age, relationship status, education, health care setting, and tumor entity were linked to preferred and/or perceived decision-making. Of those patients who preferred active involvement, about 50% perceived high levels of shared decision-making.Conclusion: The majority of patients with cancer wanted to be involved in medical decisions. Many patients perceived a high level of shared decision-making. However, many patients’ level of involvement did not fit their preference. This study provides a solid basis for efforts to improve shared decision-making in German cancer care.

Shared decision-making in atrial fibrillation: patient-reported involvement in treatment decisions.

To determine the extent of shared decision-making (SDM), during selection of oral anticoagulant (OAC) and rhythm control treatments, in patients with newly diagnosed atrial fibrillation (AF). We evaluated survey data from 1006 patients with new-onset AF enrolled at 56 US sites participating in the SATELLITE substudy of the Outcomes Registry for Better Informed Treatment of Atrial Fibrillation (ORBIT II). Patients completed surveys at enrolment and at 6-month follow-up. Patients were asked about who made their AF treatment decisions. Shared decision-making was classified as one that the patient felt was an autonomous decision or a shared decision with their healthcare provider (HCP). Approximately half of patients reported that their OAC treatment decisions were made entirely by their HCP. Compared with those reporting no SDM, patients reporting SDM for OAC were more often female (47.2% vs. 38.4%), while patients reporting SDM for rhythm control were more often male (62.2% vs. 57.6%). The most important factors cited by patients during decision-making for OAC were reducing stroke and bleeding risk, and their HCP's recommendations. After adjustment, patients with self-reported understanding of OAC, and rhythm control options, had higher odds of having participated in SDM [odds ratio (OR) 2.54, confidence interval (CI): 1.75-3.68 and OR 2.36, CI: 1.50-3.71, both P ≤ 0.001, respectively]. Shared decision-making is not widely implemented in contemporary AF practice. Patient understanding about available therapeutic options is associated with a more than a two-fold higher likelihood of SDM, and may be a potential target for future interventions.

Decision regret in men living with and beyond nonmetastatic prostate cancer in the United Kingdom: A population-based patient-reported outcome study.

ObjectiveClinical options for managing nonmetastatic prostate cancer (PCa) vary. Each option has side effects associated with it, leading to difficulty in decision‐making. This study aimed to assess the relationship between patient involvement in treatment decision‐making and subsequent decision regret (DR), and quantify the impact of health‐related quality of life (HRQL) outcomes on DR.MethodsMen living in the United Kingdom, 18 to 42 months after diagnosis of PCa, were identified from cancer registration data and sent a questionnaire. Measures included the Decision Regret Scale (DRS), Expanded Prostate cancer Index Composite short form (EPIC‐26), EQ‐5D‐5L, and an item on involvement in treatment decision‐making. Multivariable ordinal regression was utilized, with DR categorized as none, mild, or moderate/severe regret.ResultsA total of 17 193 men with stage I‐III PCa completed the DRS: 36.6% reported no regret, 43.3% mild regret, and 20.0% moderate/severe regret. The odds of reporting DR were greater if men indicated their views were not taken into account odds ratio ([OR] = 6.42, 95% CI: 5.39‐7.64) or were involved “to some extent” in decision‐making (OR = 4.63, 95% CI: 4.27‐5.02), compared with men who were “definitely” involved. After adjustment, including for involvement, men reporting moderate/big problems with urinary, bowel, or sexual function were more likely to experience regret compared with men with no/small problems. Better HRQL scores were associated with lower levels of DR.ConclusionsThis large‐scale study demonstrates the benefit of patient involvement in treatment decision‐making for nonmetastatic PCa. However, men experiencing side effects and poorer HRQL report greater DR. Promoting engagement in clinical decision‐making represents good practice and may reduce the risk of subsequent regret.

Impact of immediate initiation of antiretroviral therapy on HIV patient satisfaction.

Immediate ART (or early access to ART for all, EAAA) is becoming a national policy in many countries in sub-Saharan Africa. It is plausible that the switch from delayed to immediate ART could either increase or decrease patient satisfaction with treatment. A decrease in patient satisfaction would likely have detrimental consequences for long-term retention and adherence, in addition to the value lost because of the worsening patient experience itself. We conducted a pragmatic stepped-wedge cluster-randomized controlled trial (SW-cRCT) to determine the causal impact of immediate treatment for HIV on patient satisfaction. This seven-step SW-cRCT took place in 14 public-sector health facilities in Eswatini's Hhohho region, from September 2014 to August 2017. During each step of the trial, we randomly selected days for data collection at each study facility. During these days, a random sample of HIV patients were selected for outcome assessment. In total, 2629 patients provided data on their overall patient satisfaction and satisfaction with the following four domains of the patient experience using a five-point Likert scale: wait time, consultation time, involvement in treatment decisions, and respectful treatment. Higher values on the Likert scale indicated lower patient satisfaction. We analyzed the data using a multilevel ordered logistic regression model with individuals at the first level and health facilities at the second (cluster) level. The proportional odds ratio (OR) comparing EAAA to control was 0.91 (95% CI 0.66-1.25) for overall patient satisfaction. For the specific domains of the patient experience, the ORs describing the impact of EAAA on satisfaction were 1.04 (95% CI 0.61-1.78) for wait time, 0.90 (95% CI 0.62-1.31) for involvement in treatment decisions, 0.86 (95% CI 0.61-1.20) for consultation time, and 1.35 (95% CI 0.93-1.96) for respectful treatment. These results were robust across a wide range of sensitivity analyses. Over time - and independent of EAAA - we observed a worsening trend for both overall patient satisfaction and satisfaction in the four domains of the patient experience we measured. Our findings support the policy change from delayed to immediate ART in sub-Saharan Africa. Immediate (versus delayed) ART in public-sector health facilities in Eswatini had no effect on either overall patient satisfaction or satisfaction with four specific domains of the patient experience. At the same time, we observed a strong secular trend of decreasing patient satisfaction in both the intervention and the control arm of the trial. Further implementation research should identify approaches to ensure high patient satisfaction as ART programs grow and mature.

Oncologist-patient-caregiver decision-making discussions in the context of advanced cancer in an Asian setting.

ObjectivePatient involvement in treatment decisions is recommended in clinician‐patient encounters. Little is known about how oncologists engage patients in shared decision making in non‐Western countries. We assessed the prevalence of shared decision making among Singaporean oncologists and analysed how they discussed prognosis.MethodsWe audio‐recorded 100 consultations between advanced cancer patients and their oncologists. We developed a coding system to assess oncologist encouragement of patient participation in decision making and disclosure of an explicit prognosis. We assessed patient and oncologist characteristics that predicted these behaviours.ResultsForty‐one consultations involved treatment discussions. Oncologists almost always listed more than one treatment option (90%). They also checked patient understanding (34%), discussed pros and cons (34%) and addressed uncertainty (29%). Oncologists discussed prognosis mostly qualitatively (34%) rather than explicitly (17%). They were more likely to give an explicit prognosis when patients/caregivers asked questions related to prognosis.ConclusionOncologists in our sample engaged their patients in decision making. They have areas in which they can improve to involve patients at a deeper level to ensure shared decision making. Findings will be used to develop an intervention targeting oncologists and patients to promote patient involvement in decision making.

Experiences and supportive care needs of UK patients with pancreatic cancer: a cross-sectional questionnaire survey

ObjectivesPatients diagnosed with pancreatic cancer have the poorest survival prognosis of any cancer. This survey aimed to describe their experiences of care and supportive care needs to inform future service...

Chinese‐Australian women with breast cancer call for culturally appropriate information and improved communication with health professionals

For culturally and linguistically diverse patients, breast cancer presents complex physical, psychosocial, and health care challenges, often exacerbated by a lack of culturally appropriate information and communication barriers with the treating team (even with the help of interpreters). This qualitative study aims to broadly explore the experience of breast cancer and coping strategies utilized by Chinese-Australian women. Twenty-four Chinese-Australian women with breast cancer participated in either a semi-structured interview or a focus group conducted in participants' preferred language, audio-recorded, transcribed, and subjected to thematic analysis. Two prominent themes emerged, related to information seeking, and communication with health care professionals. The theme of information needs and seeking highlighted unmet information needs and the multiple sources that are consulted for information. The second theme, communication with health care professionals, language barriers, and preferences, identified varying degrees of involvement in treatment decision-making, preference for information and interactions in Cantonese or Mandarin, and problems with interpreter services. Chinese women with breast cancer face significant challenges in obtaining adequate information and can feel excluded from treatment decision-making. Women in this study expressed their eagerness for obtaining accurate information and engaging in open communication with their doctors. There is a need for culturally sensitive information resources and decision aids to enhance communication between Chinese migrant patients with cancer and health care professionals. Clinician participation in cultural awareness training is also recommended.

Highlights from the 10th IAS Conference on Science

Almost 6000 delegates gathered in Mexico City, July 21–24, 2019, for the biannual International AIDS Society science meeting. Treatment innovation and vaccine trials made the headlines. A lesson to learn from dolutegravir roll-outDolutegravir is back. This was the message from the 10th International AIDS Society Conference on HIV Science in Mexico City. WHO used the conference to announce they were once again recommending dolutegravir-based antiretroviral therapy (ART) as the preferred first-line treatment for all populations, including pregnant women and women of childbearing potential. However, the past year of treatment uncertainty for the group most affected by HIV in the world, raises questions about drug development, treatment recommendations, and patients’ involvement in treatment decisions. Full-Text PDF

Seven-day shared decision making for outpatients with first episode of mood disorders among university students: A randomized controlled trial

Providing appropriate treatment to patients with a first episode of mood disorders is crucial for recovery from the disorders. Although shared decision making (SDM) has been proposed as a promising model in psychiatric practice, an appropriate SDM approach has not yet been established. The aim of the current study was to evaluate the effects of an originally developed seven-day SDM program for outpatients with a first episode of mood disorders among university students. University students with a first episode of mood disorders were randomly allocated into two arms: SDM and control. The participants in the SDM arm received the seven-day SDM program, which included option presentation consultation, external deliberation with a decision aid booklet, decision coaching by a nurse, and decision-making consultation. The control arm received usual care. The primary outcome was patient-perceived involvement. We enrolled 88 participants. Compared with usual care, the SDM program significantly improved patient-perceived involvement in treatment decision making without taking up clinicians’ time. The program did not lead to worse symptoms of mood disorders. In conclusion, sharing treatment decision making with university students with a first episode of mood disorders is feasible.

U.S. Survey of Shared Decision Making Use for Treating Pregnant Women Presenting with Opioid Use Disorder

Background: The incidence of pregnant women with an opioid use disorder (PWOUD) at delivery has quadrupled since 1999. State-specific statutes regarding PWOUD often pose punitive measures to the mother–infant dyad, involving the child welfare and criminal justice systems. Shared decision making (SDM) assists individuals through complex health and recovery processes. Objectives: To determine use of SDM in treating PWOUD and associated factors and to quantify physicians’ review and discussion of child welfare statutes. Methods: The American College of Obstetricians and Gynecologists (ACOG) e-mailed the survey to a random sample of members, with 568 responding. Bivariate analyses to identify factors associated with each outcome were performed using Wilcoxon Rank Sum tests or Fisher’s Exact tests. Variables yielding p values < .20 were included in initial logistic regression models; the final model included only significant (<.05) variables. Results: Sixty-one percent used SDM most of the time. Logistic regression indicated that those using SDM were more likely to have had training in substance use disorder and felt prepared for caring for PWOUD; 39% reviewed statutes, and 54% discussed them with PWOUDs. Conclusion: Survey results provide evidence for patient-centered care approaches that support PWOUD involvement in treatment decision making. The SDM model provides an empowerment framework for women to be involved in the process during their pregnancies and opioid use disorder treatments. Future studies might assess the effectiveness of SDM dialogs with PWOUD and evaluate CME training and medical curricula regarding the SDM model.

The Momentum trial: the efficacy of using a smartphone application to promote patient activation and support shared decision making in people with a diagnosis of schizophrenia in outpatient treatment settings: a randomized controlled single-blind trial

BackgroundShared decision making (SDM) is often defined as an interactive process that ensures that both patient and practitioner are actively involved in the treatment and that they share all relevant information to arrive at a mental health decision. Previous SDM interventions have found improvements in outcomes such as personal recovery, higher perceived involvement in treatment decisions and knowledge about one’s disease. Still, SDM occurs less frequently in mental health care than in primary care. Electronic aids developed to support patient activation and SDM could be a promising mean to engage patients in their mental healthcare.The aim of this trial is to investigate the effects of using a smartphone app to promote patient activation and support SDM for people with schizophrenia-spectrum disorders in an outpatient treatment setting.MethodsThis randomised controlled trial will allocate participants to one of two groups: (1) Intervention group: smartphone app and TAU (treatment as usual) or (2) Control group: TAU without the smartphone app. A total sample size of 260 people with a diagnosis of schizophrenia, schizotypal or delusional disorder will be recruited from five OPUS teams (a specialized early intervention program) in Denmark between 2019 and 2020. The intervention will last for 6 months with data collection at baseline, and at 3 and 6 months. Primary outcome will be self-perceived patient activation. Secondary outcomes will be feeling of being prepared for SDM; self-efficacy; working alliance; treatment satisfaction; positive and negative symptoms; level of functioning; hope; and perceived efficacy in patient-provider interaction. Patients’ and health providers’ preferences in clinical decision making will be assessed. Patients’ usage and perceived usefulness of the app will be explored.DiscussionThis study will investigate the efficacy of using the smartphone app to support people with severe mental illness in engaging in their own healthcare management. The study may provide evidence to the idea that linking client and practitioner in digital solutions can have advantages in facilitating SDM in mental health. The trial will provide new knowledge of whether a digital healthcare solution can improve patient activation and support SDM for people with severe mental illness.Trial registrationClinicalTrials.gov number: NCT03554655 Registered on: June 13, 2018.

Does involving patients in treatment decisions affect perceptions of treatments and therapists?

Psychotherapists may offer patients more or less involvement when deciding on a treatment. The aim of the present research was to examine whether perceptions of the treatment and therapist differ when a therapist uses a paternalistic style in making treatment decisions or a more collaborative approach, in which the patient helps in selecting treatment. In the study, 172 participants, recruited from a university setting and a national sample, listened to a simulated conversation representing either a paternalism or informed-choice model of a therapist-patient interaction. The participants then rated their expectation the treatment would help the patient, their perception of the therapist’s trustworthiness, and their own preference for relying on clinicians for knowledge and decisions. Analysis indicated that among participants preferring to rely on clinicians, perceptions did not differ reliably based on the type of interaction they heard. However, participants wanting more involvement in treatment choices perceived greater treatment effectiveness and clinician trustworthiness for the interaction in which the patient was offered treatment choices. These results suggest that if therapists adopt a collaborative approach, it has the potential to enhance perceptions of individuals preferring the collaborative style without negatively affecting those who prefer less involvement in treatment decisions.

Patient-Reported Experiences in Discussing Prescribed Medications with a Health Care Provider: Evidence for Racial/Ethnic Disparities in a Large Health Care Delivery System.

The objective was to understand patient-reported experiences in communicating with a health care provider about prescribed medications in a health care setting serving diverse racial/ethnic groups. Adult patients who completed a patient-experience survey and received a prescription for a hypertension, hyperlipidemia, or diabetes medication at the surveyed encounter were studied (N = 19,006). Data were collected in a large mixed-payer outpatient health care system in northern California between 2011 and 2014. Surveys were linked to the electronic health records of the office visit to which the survey refers, with detailed information on visit content, provider, and patient characteristics. The focus was on 2 survey questions asking about providers' efforts to include patients in treatment decisions and the information received about medications. Logistic regression was used to assess factors associated with survey responses, which were dichotomized as very good or not (ie, good, fair, poor, very poor). Chinese (OR: 0.59; 95% CI: 0.50-0.70), Asian Indians (0.68; 0.54-0.84), Japanese (0.74; 0.57-0.98), Koreans (0.46; 0.25-0.83), Vietnamese (0.51; 0.27-0.98), and African Americans (0.74; 0.55-0.99) vs. non-Hispanic whites (NHWs) reported poorer experiences of involvement in treatment decisions. Similarly, Chinese (0.59; 0.49-0.70), Asian Indians (0.67; 0.54-0.83), Koreans (0.38; 0.21-0.70), Vietnamese (0.46; 0.25-0.87), African Americans (0.65; 0.49-0.87), and Mexicans (0.77; 0.61-0.98) vs. NHWs reported poorer experiences for information received about medications. Almost all racial/ethnic groups report poorer experiences with involvement in treatment decisions and information received about medications than NHWs in the same clinical setting, which may contribute to poorer adherence and outcomes among racial/ethnic minority groups.

Women\u2019s experiences of receiving care for pelvic organ prolapse: a qualitative study

BackgroundPelvic organ prolapse is a common urogenital condition affecting 41–50% of women over the age of 40. To achieve early diagnosis and appropriate treatment, it is important that care is sensitive to and meets women’s needs, throughout their patient journey. This study explored women’s experiences of seeking diagnosis and treatment for prolapse and their needs and priorities for improving person-centred care.MethodsTwenty-two women receiving prolapse care through urogynaecology services across three purposefully selected NHS UK sites took part in three focus groups and four telephone interviews. A topic guide facilitated discussions about women’s experiences of prolapse, diagnosis, treatment, follow-up, interactions with healthcare professionals, overall service delivery, and ideals for future services to meet their needs. Data were analysed thematically.ResultsThree themes emerged relating to women’s experiences of a) Evaluating what is normal b) Hobson’s choice of treatment decisions, and c) The trial and error of treatment and technique. Women often delayed seeking help for their symptoms due to lack of awareness, embarrassment and stigma. When presented to GPs, their symptoms were often dismissed and unaddressed until they became more severe. Women reported receiving little or no choice in treatment decisions. Choices were often influenced by health professionals’ preferences which were subtly reflected through the framing of the offer. Women’s embodied knowledge of their condition and treatment was largely unheeded, resulting in decisions that were inconsistent with women’s preferences and needs. Physiotherapy based interventions were reported as helping women regain control over their symptoms and life. A need for greater awareness of prolapse and physiotherapy interventions among women, GPs and consultants was identified alongside greater focus on prevention, early diagnosis and regular follow-up. Greater choice and involvement in treatment decision making was desired.ConclusionsAs prolapse treatment options expand to include more conservative choices, greater awareness and education is needed among women and professionals about these as a first line treatment and preventive measure, alongside a multi-professional team approach to treatment decision making. Women presenting with prolapse symptoms need to be listened to by the health care team, offered better information about treatment choices, and supported to make a decision that is right for them.