Dataset Information

Pilot Testing of a Patient Decision Aid for Adolescents with Severe Obesity in US Pediatric Weight Management Programs within the COMPASS Network.

ABSTRACT: Shared decision-making (SDM) is a best practice for delivering high-quality, patient-centered care when there are multiple options from which to choose. A patient decision aid (PDA) to promote SDM for the treatment of adolescent severe obesity was piloted among 12-17-year-olds (n = 31) from six pediatric weight management programs within the Childhood Obesity Multi Program Analysis and Study System (COMPASS). Medical providers used a brochure that described indications, risks, and benefits of intensive lifestyle management alone versus bariatric surgery plus lifestyle. Immediately after, patients/families completed a survey. Patient/family perceptions of provider effort to promote understanding of health issues, to listen to what mattered most to them, and to include what mattered most to them in choosing next steps averaged 8.6, 8.8, and 8.7, respectively (0 = no effort, 9 = every effort). Nearly all (96%) reported knowing the risks/benefits of each treatment option and feeling clear about which risks/benefits mattered most to them. Most (93%) reported having enough support/advice to make a choice, and 89% felt sure about what the best choice was. Providers largely found the PDA to be feasible and acceptable. This pilot will guide a more rigorous study to determine the PDA's effectiveness to support decision-making for adolescent severe obesity treatment.

SUBMITTER: Moore J

PROVIDER: S-EPMC6572315 | biostudies-literature | 2019 May

REPOSITORIES: biostudies-literature

ACCESS DATA

Publications

Pilot Testing of a Patient Decision Aid for Adolescents with Severe Obesity in US Pediatric Weight Management Programs within the COMPASS Network.

Moore Jaime J Haemer Matthew M Mirza Nazrat N Z Weatherall Ying Y Han Joan J Mangarelli Caren C Hawkins Mary Jane MJ Xanthakos Stavra S Siegel Robert R

International journal of environmental research and public health 20190520 10

Shared decision-making (SDM) is a best practice for delivering high-quality, patient-centered care when there are multiple options from which to choose. A patient decision aid (PDA) to promote SDM for the treatment of adolescent severe obesity was piloted among 12-17-year-olds (<i>n</i> = 31) from six pediatric weight management programs within the Childhood Obesity Multi Program Analysis and Study System (COMPASS). Medical providers used a brochure that described indications, risks, and benefit ...[more]

PMID: 31137491

Similar Datasets

Project description:BackgroundThe predominant oncologist-led model in many countries is unsustainable to meet the needs of a growing cohort of breast cancer survivors (BCS). Despite available alternative models, adoption rates have been poor. To help BCS navigate survivorship care, we aimed to systematically develop a decision aid (DA) to guide their choice of follow-up care model and evaluate its acceptability and usability among BCS and health care providers (HCPs).MethodsWe recruited BCS aged ≥ 21 years who have completed primary treatment and understand English. BCS receiving palliative care or with cognitive impairment were excluded. HCPs who routinely discussed post-treatment care with BCS were purposively sampled based on disciplines. Each participant reviewed the DA during a semi-structured interview using the 'think aloud' approach and completed an acceptability questionnaire. Descriptive statistics and directed content analysis were used.ResultsWe conducted three rounds of alpha testing with 15 BCS and 8 HCPs. All BCS found the final DA prototype easy to navigate with sufficient interactivity. The information imbalance favouring the shared care option perceived by 60% of BCS in early rounds was rectified. The length of DA was optimized to be 'just right'. Key revisions made included (1) presenting care options side-by-side to improve perceived information balance, (2) creating dedicated sections explaining HCPs' care roles to address gaps in health system contextual knowledge, and (3) employing a multicriteria decision analysis method for preference clarification exercise to reflect the user's openness towards shared care. Most BCS (73%) found the DA useful for decision-making, and 93% were willing to discuss the DA with their HCPs. Most HCPs (88%) agreed that the DA was a reliable tool and would be easily integrated into routine care.ConclusionsOur experience highlighted the need to provide contextual information on the health care system for decisions related to care delivery. Developers should address potential variability within the care model and clarify inherent biases, such as low confidence levels in primary care. Future work could expand on the developed DA's informational structure to apply to other care models and leverage artificial intelligence to optimize information delivery.

Project description:BACKGROUND:Future infertility is a significant concern for survivors of childhood and adolescent cancer. Children and adolescents may have the opportunity to undergo fertility preservation (FP) procedures (which preserve gonadal tissue or gametes for future use) prior to the cancer treatment. However, the decision is very complex, as it is often made by parents as proxy decision makers at the time of cancer diagnosis, and is time-sensitive (needing to occur before the cancer treatment begins). Furthermore, FP procedures in children and adolescents are experimental and cannot guarantee future fertility. An uninformed decision may result in future decision regret. OBJECTIVE:This study aimed to assess the acceptability, usability, and feasibility of a Web-based FP decision aid (DA) in parents of children and adolescents with cancer and clinicians. Fertility knowledge and decision regret were compared in families who reviewed the DA compared with those who did not. METHODS:The Web-based DA was developed according to the International Patient Decision Aid Standards. A cross-sectional study of parents of patients with cancer, who discussed fertility, and clinicians at a tertiary children's hospital was undertaken. The acceptability, usability, and feasibility of the DA were assessed using a pre-post survey design. Measures included the validated Decision Regret Scale, a purpose-designed fertility-related knowledge scale, questions regarding satisfaction with the DA, and open-ended responses for additional feedback. Furthermore, clinicians involved in FP were also invited to review the DA. RESULTS:We enrolled 34 parents and 11 clinicians in this study. Participants who reviewed the DA (15 parents and 11 clinicians) expressed satisfaction with its content and functionality. Parents reported an improved understanding of cancer treatments, infertility, and FP procedures and did not report greater decision regret after DA review. Most parents (13/15, 86%) would recommend the DA to other parents. All clinicians had a consensus that this was a valid and relevant information source for all involved in fertility care. CONCLUSIONS:It is an international standard of care to discuss the impact of cancer treatment on fertility before cancer treatment. This is the first fertility DA for parents of children and adolescents with cancer and is found to be relevant and acceptable by parents and clinicians. This DA has the potential to help support parents to make informed fertility-related decisions for their children and adolescents. However, future research is needed to assess the impact of the DA on prospective decision making.

Dataset Information

Pilot Testing of a Patient Decision Aid for Adolescents with Severe Obesity in US Pediatric Weight Management Programs within the COMPASS Network.

Publications

Pilot Testing of a Patient Decision Aid for Adolescents with Severe Obesity in US Pediatric Weight Management Programs within the COMPASS Network.

Similar Datasets

OmicsDI is part of the ELIXIR infrastructure

Tweets