Information needs during cancer care: Qualitative research with locally advanced cervical cancer patients in Brazil, China, Germany, & the US.

Objective: This study aimed to identify the information needs and factors for making informed treatment decisions among a diverse group of locally advanced cervical cancer (LACC) patients. Methods: Semi-structured interviews were conducted with LACC patients of diverse demographic and socioeconomic backgrounds within two years of their cancer diagnosis. Trained moderators asked open-ended questions about patients' cancer journeys. Transcripts were analyzed using NVivo software to identify emergent themes. Results: In 2022, 92 LACC patients in the United States (n = 26), Brazil (n = 25), China (n = 25), and Germany (n = 16) participated in the study. Physicians were valued sources of information, providing patients with details on prognosis, treatment options, and side effects. While most patients trusted their physicians, one-third sought a second opinion to validate their diagnosis or find a more trusted physician.Most patients conducted their own research on treatment options, side effects, causes of LACC, symptoms, and others' experiences. Challenges to information searches included understanding medical terms, finding relevant information, and evaluating source credibility.Overall, patients felt knowledgeable enough to participate in treatment decisions, either by accepting the recommended treatment or collaborating with their physicians. Nearly one-third of patients desired a more significant role in the decision-making process. Conclusion: This study highlights the importance of physicians providing LACC patients comprehensive and understandable information, while involving them in the decision-making process. Understanding LACC patients' motivations to seek information and their willingness to actively engage in treatment decisions can lead to improved patient satisfaction in their cancer care.

Japanese patient preferences regarding intermediate to advanced hepatocellular carcinoma treatments.

Purpose: This study aimed to evaluate Japanese patient preferences regarding features of intermediate or advanced (Progressed) hepatocellular carcinoma (HCC) treatments: transarterial chemoembolization (TACE), hepatic arterial infusion chemotherapy (HAIC), and oral anti-cancer therapy. Methods: Patients with HCC, recruited from clinical sites and a patient panel in Japan, completed a cross-sectional web-based survey. Preferences were quantified using best-worst scaling, where patients identified the best and worst among 13 treatment features. Direct elicitation was used to identify preference for TACE, HAIC, or oral therapy, including the likelihood of trying each. Additional items asked for the willingness to try an oral medication that delays progression by six months but has an 8% or 21% risk of severe hand-foot skin reaction (HFSR). Results: The sample (N=119; 29 early stage; 90 Progressed) most preferred "oral medication", "artery branches plugged", and "prevents formation of new blood vessels", and least preferred "risk of liver damage" and "risk of catheter-related complications". Overall, 51%, 40%, and 8% preferred oral therapy, TACE, and HAIC, respectively (p<0.05), and the mean likelihood of trying each were 59%, 52%, and 35%, respectively (p<0.001). Patients with sorafenib or TACE experience most preferred what they had received; however, both groups were equally willing to try the other treatment. Patients preferring oral therapy favored "oral medication" over "artery branches plugged", "surgery is repeated as required when the cancer grows again", and "risk of liver damage", compared to those preferring TACE (p<0.05). Sixty-eight percent would probably try therapy with an 8% risk of severe HFSR, compared to 50% with a 21% risk. Conclusion: Treatment type, mode of action, and risks may drive HCC patient preferences. Such features likely should be incorporated into physician-patient interactions regarding treatment decision-making.

Societal preferences for adjuvant melanoma health states: UK and Australia.

BACKGROUND: No studies have measured preference-based utility weights for specific toxicities and outcomes associated with approved and investigational adjuvant treatments for patients with resected high-risk melanoma. METHODS: A cross-sectional study was conducted in the United Kingdom and Australia to obtain utilities for 14 adjuvant melanoma health states. One-on-one interviews were conducted using standard gamble; utility weights range from 0.0, dead, to 1.0, full health. Supplemental risk questions also were asked. RESULTS: Among 155 participants (52% male; mean age, 46 years) "adjuvant treatment no toxicities" (0.89) was most preferred, followed by "induction treatment" (0.88), and "no treatment" (0.86). Participants least preferred "cancer recurrence" (0.62); the utility for "cancer recurrence and 10-year survival with treatment" was 0.70. Disutilities for grade 2 toxicities ranged from -0.06 for fatigue to -0.13 for hypophysitis. The mean maximum acceptable risk of a life-threatening event ranged from 30% for a 6% increase in the chance of remaining cancer free over 3 years to 40% for an 18% increase; Australian respondents were willing to take higher risks. CONCLUSION: Reproducible health utilities for adjuvant melanoma health states were obtained from the general population in two countries. These utilities can be incorporated into treatment-specific cost-effectiveness evaluations.

Development of a stated-preference instrument to prioritize treatment goals in recent onset schizophrenia.

OBJECTIVE: This study sought to evaluate a new stated-preference instrument to prioritize multiple treatment goals among people with recent onset schizophrenia. METHODS: A draft survey instrument was developed to assess preferences for 13 key treatment goals that were identified based on the literature. The survey incorporates best-worst scaling (BWS), which shows repeated subsets comprising 4 of the 13 goals, and respondents identify which is most important and which is least important to them. Pre-test interviews were conducted in the UK, Italy, and Germany among people aged 18 to 35 diagnosed with schizophrenia within the past 5 years. Specifically, participants completed the instrument online in their native language, followed by a telephone interview to provide feedback on the clarity, relevance, and comprehensiveness of the survey. The interview data were analyzed to assess interpretation and content validity of the survey. RESULTS: Fifteen participants (five per country) provided feedback (mean age = 31; 60% male). Feedback was comparable across countries and confirmed that the key treatment goals assessed were relevant and meaningful. Probing by interviewers ascertained that respondents interpreted the questions appropriately and identified the treatment goals that were most and least important to them. Based on the characterization of the goals, a conceptual model was developed illustrating hypothesized associations among them. CONCLUSION: The results confirm that the BWS methodology and key treatment goals in this new instrument are appropriate for use in recent onset schizophrenia. These results will help guide measurement of patient-relevant endpoints in future studies.

Use of best-worst scaling to assess patient perceptions of treatments for refractory overactive bladder.

AIMS: Refractory overactive bladder (OAB) treatments, including sacral neuromodulation (SNM), onabotulinumtoxin A (OnabotA), and percutaneous tibial nerve stimulation (PTNS), differ considerably. Best-Worst Scaling (BWS) was used to assess patient preferences for these treatments. METHODS: A cross-sectional Web survey, based on findings from qualitative interviews with 23 OAB patients and 7 clinical experts, was conducted with idiopathic OAB patients in the US and UK. The BWS exercise involved prioritizing subsets of 13 attributes across 13 choice tasks, where patients identified the attribute they considered as best and as worst in each task. Attribute BWS scores, ranging from -1.0 (worst) to 1.0 (best) were calculated based on the rates that each attribute was chosen. Attitudes toward the attributes also were assessed via like/dislike Likert scales, and questions regarding the percentage likelihood (0-100%) of trying each treatment, based on standardized treatment descriptions. RESULTS: The sample included 245 patients (118 US, 127 UK); 79% female, mean age 50 ± 7.8 years. All 13 attribute BWS scores were significantly positive or negative. "Lasting improvement" (0.82), "minimal side effects" (0.67), and "sends signals between bladder and brain" (0.35)' were rated most favorably, and "complications with implant" (-0.65), and "be willing to self-catheterize" (-0.53) were rated worst. All but one of the attribute BWS scores were significantly correlated with the respective like/dislike scores and the percentage likelihood estimates for trying one of the three treatments. CONCLUSION: BWS was successful in assessing the magnitude of patient preferences for key attributes associated with substantially different refractory OAB therapies. Neurourol. Urodynam. 35:1028-1033, 2016. © 2015 Wiley Periodicals, Inc.

Patient preferences for treating refractory overactive bladder in the UK.

OBJECTIVE: To evaluate patient preferences for refractory overactive bladder (OAB) treatments: sacral neuromodulation (SNM), onabotulinum toxin A (Botox(®)), and percutaneous tibial nerve stimulation (PTNS). MATERIALS AND METHODS: A cross-sectional Web survey was conducted with UK idiopathic OAB patients, recruited by a market research company. Preference was explored using direct questioning, comparing SNM, Botox, and PTNS, and via best-worst scaling (BWS). In BWS, patients prioritized subsets of 13 treatment characteristics (attributes) across 13 choice tasks, identifying the attribute they considered best and worst in each task. The attributes were those that were identified by patients in previous qualitative interviews as influential in treatment selection. BWS scores for each attribute, ranging from 1.0 (most favourable) to -1.0 (most unfavourable), were calculated based on the rates they were identified as best and as worst. To identify attributes that may influence treatment choice, BWS scores were compared among patients based on their most preferred treatment using analyses of variance; pairwise differences were assessed using Tukey's multiple comparisons test. RESULTS: The study population (N = 139) was 77 % female, had a mean age of 49 years, and were diagnosed a mean of 6.1 years ago. All 13 attribute BWS scores were viewed positively (score > 0.0) or negatively (score < 0.0). Among the 127 (91 %) of patients who had experience with OAB medication only, most (≥80 %) were willing to try each of the three treatments; 57, 34, and 9 % most preferred PTNS, SNM, and Botox, respectively. Preferences for the attributes differed based on which treatment that patients preferred. Specifically, patients preferring SNM (PS) favoured 'implanted device in upper buttock' more than those preferring PTNS (PP) or Botox (PB). Compared to PB, PS also favoured 'sends signals between bladder and brain to help restore bladder function' and 'test phase'. PB favoured 'Botox (botulinum toxin) treatment' and 'treatment procedure delivered through the urethra' more than PS and PP. PP favoured the following more than PS and PB: 'needle inserted into ankle', 'minimal side effects' and 'treatment requires repeated visits over time'. CONCLUSION: This study identified specific characteristics of specialized therapies for refractory OAB that may significantly influence patient preferences, which may be used to help inform treatment decision-making.

The unmet needs of all adults with ADHD are not the same: a focus on Europe.

This review discusses the unmet needs in adult ADHD subgroups in Europe: adolescents in transition, adult patients, employees, older adults, and those in the criminal justice system. Analysis of the literature and an ADHD web forum was conducted. The visibility of adult ADHD remains low, and finding professionals able to diagnose is difficult for both adolescents as well as adults. Many ADHD cases go undiagnosed and untreated; ADHD may be mistaken for other common mental health conditions or missed in the presence of comorbidities. Pharmacological and psychosocial treatment services are very limited. Most employers do not understand how to address ADHD, and employees fear stigmatization. Older age individuals (>60 years) may feel worse with unrecognized ADHD, and those incarcerated with ADHD are likely to cost disproportionately more than their peers, with high recidivism rates. Strategies to address unmet needs and accommodate ADHD adults need not be expensive or time consuming to implement.