Patient Experience Of Treatment Research Articles

Insights Into the Patient Experience of Hormone Therapy for Early Breast Cancer Treatment Using Patient Forum Discussions and Natural Language Processing.

Understanding the real-world experience of patients with early breast cancer (eBC) is imperative for optimizing outcomes and evolving patient care. However, there is a lack of patient-level data, hindering clinical development. This social listening study was performed to understand patient insights into symptoms and impacts of hormone therapy (HT) for eBC using posts from patient forums on breastcancer.org to inform future clinical research. Natural language processing (NLP) and machine learning techniques were used to identify themes related to eBC from a sample of 500,000 posts. After relevant data selection, 362,074 eBC posts were retained for further analysis of symptoms and impacts related to HT, as well as insights into symptom severity, pain locations, and symptom management using exercise and yoga. Overall, 32 symptoms and nine impacts had significant associations with ≥one HT. Hot flush (relative risk [RR], 6.70 [95% CI, 3.36 to 13.36]), arthralgia (RR, 6.67 [95% CI, 3.53 to 12.59]), weight increased (RR, 4.83 [95% CI, 3.20 to 7.28]), mood swings (RR, 7.36 [95% CI, 5.75 to 9.42]), insomnia (RR, 4.76 [95% CI, 3.14 to 7.22]), and depression (RR, 3.05 [95% CI, 1.71 to 5.44]) demonstrated the strongest associations. Severe headache, dizziness, back pain, and muscle spasms showed significant associations with ≥one HT despite their low overall prevalence in eBC posts. The social listening approach allowed the identification of real-world insights from posts specific to eBC HT from a large-scale online breast cancer forum that captured experiences from a uniquely diverse group of patients. Using NLP has a potential to scale analysis of patient feedback and reveal actionable insights into patient experiences of treatment that can inform the development of future therapies and improve the care of patients with eBC.

A qualitative study exploring the patient experience of treatment with PCSK9 monoclonal antibodies

A qualitative study exploring the patient experience of treatment with PCSK9 monoclonal antibodies

Patient experiences of psychological therapy for depression: a qualitative metasynthesis

BackgroundGlobally, national guidelines for depression have prioritised evidence from randomised controlled trials and quantitative meta-analyses, omitting qualitative research concerning patient experience of treatments. A review of patient experience research can provide a comprehensive overview of this important form of evidence and thus enable the voices and subjectivities of those affected by depression to have an impact on the treatments and services they are offered. This review aims to seek a comprehensive understanding of patient experiences of psychological therapies for depression using a systematic and rigorous approach to review and synthesis of qualitative research.MethodPsychINFO, PsychARTICLES, MEDLINE, and CINAHL were searched for published articles using a qualitative approach to examine experiences of psychological therapies for depression. All types of psychological therapy were included irrespective of model or modes of delivery (e.g. remote or in person; group or individual). Each article was assessed following guidance provided by the Critical Appraisal Skill Programme tool. Articles were entered in full into NVIVO and themes were extracted and synthesized following inductive thematic analysis.ResultsThirty-seven studies, representing 671 patients were included. Three main themes are described; the role of therapy features and setting; therapy processes and how they impact on outcomes; and therapy outcomes (benefits and limitations). Subthemes are described within these themes and include discussion of what works and what’s unhelpful; issues integrating therapy with real life; patient preferences and individual difference; challenges of undertaking therapy; influence of the therapist; benefits of therapy; limits of therapy and what happens when therapy ends.ConclusionsFindings point to the importance of common factors in psychotherapies; highlight the need to assess negative outcomes; and indicate the need for patients to be more involved in discussions and decisions about therapy, including tailoring therapy to individual needs and taking social and cultural contexts into account.

0624 Voice of the Patient: A Patient-Centered Exploration of Factors Influencing Obstructive Sleep Apnea Care

Abstract Introduction Despite widely available efficacious treatments for obstructive sleep apnea (OSA), patients commonly report frustration in accessing and adhering to treatments. Sparse research has explored factors influencing OSA care from the patient perspective, which may limit provision of patient-centered care: care responsive to patient preferences, needs, and values. To this end, we conducted qualitative research to identify factors, voiced by patients, that influence OSA treatment initiation and adherence. Methods We performed semi-structured interviews with 15 patients previously diagnosed with OSA from Boston, MA and a national patient portal (MyApnea.Org). Patients were asked about barriers and facilitators to their diagnosis and treatment as well as about their preferences and values that informed their treatment decisions. Interviews were audio-recorded and transcribed. A qualitative content analysis was performed to identify themes. After developing a codebook, interviews were coded. Codes were then audited and finalized by study team consensus. Results Our sample was aged 25-74 years; 71% identified as female. Among participants, 57.1% identified as White, 14.3% Black, 14.3% Asian, and 14.3% Other. Major themes were broadly classified as (1) facilitators (provision of useful information on treatment options, participation in shared decision-making, continued clinician support); (2) barriers (inconvenience of treatment, difficulty of habit formation, treatment side effects, competing comorbid conditions); (3) motivators (value of improving chronic health, family support, positive treatment effects); (4) contextual factors (insufficient knowledge/awareness of OSA, navigating healthcare systems, access to informational resources). Awareness of OSA symptoms and treatments, and ongoing support were cited as the most common factors influencing the patient experience. Conclusion This formative research highlights that diverse factors impact the OSA evaluation and treatment patient experience. Further research should test interventions that promote effective patient-centered care for OSA, such as shared decision-making tools. Support Brigham and Women’s Hospital Research Institute Patient-Centered Comparative Effectiveness Research Center Grant

Adding patient-reported outcomes to a multisite registry to quantify quality of life and experiences of disease and treatment for youth with juvenile idiopathic arthritis

BackgroundChildren with Juvenile Idiopathic Arthritis (JIA) often have poor health-related quality of life (HRQOL) despite advances in treatment. Patient-centered research may shed light on how patient experiences of treatment and disease contribute to HRQOL, pinpointing directions for improving care and enhancing outcomes.MethodsParent proxies of youth enrolled in the Childhood Arthritis and Rheumatology Research Alliance (CARRA) Registry shared patient-reported outcomes about their child’s HRQOL and experiences of disease and treatment burden (pain interference, morning stiffness, history of medication side effects and methotrexate intolerance). Contributions of these measures to HRQOL were estimated using generalized estimating equations accounting for site and patient demographics.ResultsPatients (N = 180) were 81.1% white non-Hispanic and 76.7% female. Mean age was 11.8 (SD = 3.6) years, mean disease duration was 7.7 years (SD = 3.5). Mean Total Pediatric Quality of Life was 76.7 (SD = 18.2). Mean pain interference score was 50.1 (SD = 11.1). Nearly one-in-five (17.8%) youth experienced >15 min of morning stiffness on a typical day, more than one quarter (26.7%) reported ≥1 serious medication side effect and among 90 methotrexate users, 42.2% met criteria for methotrexate intolerance. Measures of disease and treatment burden were independently negatively associated with HRQOL (all p-values <0.01). Negative associations among measures of treatment burden and HRQOL were attenuated after controlling for disease burden and clinical characteristics but remained significant.ConclusionsFor youth with JIA, HRQOL is multidimensional, reflecting disease as well as treatment factors. Adverse treatment experiences undermine HRQOL even after accounting for disease symptoms and disease activity and should be assessed routinely to improve wellbeing.

Psychologically informed physiotherapy for chronic pain: patient experiences of treatment and therapeutic process

ObjectivesPsychologically informed physiotherapy is used widely with patients with chronic pain. This study aimed to investigate patients’ beliefs about, and experiences of, this type of treatment, and helpful and unhelpful experiences. DesignA qualitative study using Interpretative Phenomenological Analysis of semi-structured interviews. ParticipantsParticipants (n=8) were recruited within a national specialist pain centre following a residential pain management programme including 2.25hours of physiotherapy each day. Participants were eligible for inclusion if they had achieved clinically reliable improvements in physical functioning during treatment. Interviews were conducted 3 months post-treatment. ResultsParticipants reported differing experiences of physiotherapy interventions and differences in the therapeutic relationship, valuing a more individualised approach. The themes of ‘working with the whole of me’, ‘more than just a professional’, ‘awareness’ and ‘working through challenges in the therapeutic relationship’ emerged as central to behavioural change, together with promotion of perceptions of improved capability and physical capacity. ConclusionPsychologically informed physiotherapy is an effective treatment for some patients with chronic pain. Participants experienced this approach as uniquely different from non-psychologically informed physiotherapy approaches due to its focus on working with the patient's whole experience. Therapeutic alliance and management of relationship ruptures may have more importance than previously appreciated in physiotherapy.

‘What are you going to do, confiscate their passports?’ Professional perspectives on cross-border reproductive travel

Objective: This article reports findings from a UK-based study which explored the phenomenon of overseas travel for fertility treatment. The first phase of this project aimed to explore how infertility clinicians and others professionally involved in fertility treatment understand the nature and consequences of cross-border reproductive travel. Background: There are indications that, for a variety of reasons, people from the UK are increasingly travelling across national borders to access assisted reproductive technologies. While research with patients is growing, little is known about how ‘fertility tourism’ is perceived by health professionals and others with a close association with infertility patients. Methods: Using an interpretivist approach, this exploratory research included focussed discussions with 20 people professionally knowledgeable about patients who had either been abroad or were considering having treatment outside the UK. Semi-structured interviews were recorded, transcribed verbatim and subjected to a thematic analysis. Results: Three conceptual categories are developed from the data: ‘the autonomous patient’; ‘cross-border travel as risk’, and ‘professional responsibilities in harm minimisation’. Professionals construct nuanced, complex and sometimes contradictory narratives of the ‘fertility traveller’, as vulnerable and knowledgeable; as engaged in risky behaviour and in its active minimisation. Conclusions: There is little support for the suggestion that states should seek to prevent cross-border treatment. Rather, an argument is made for less direct strategies to safeguard patient interests. Further research is required to assess the impact of professional views and actions on patient choices and patient experiences of treatment, before, during and after travelling abroad.