Patients’ experience of recurrent/metastatic head and neck squamous cell carcinoma and their perspective on the EORTC QLQC30 and QLQ-H&N35 questionnaires: a qualitative study

Abstract Background Head and neck squamous cell carcinoma (HNSCC) and its associated treatments may affect all aspects of patients’ health-related quality of life (HRQoL). Although the EORTC QLQ-H&N35 is regularly administered to patients with HNSCC, there is a paucity of studies re-assessing the conceptual relevance of this patient-reported outcome (PRO) measure from a patient perspective. Furthermore, the content validity of the EORTC QLQ-C30 has not been widely documented in patients with recurrent and/or metastatic HNSCC. The objectives of this study were to understand patients’ experiences of recurrent/metastatic HNSCC and its treatments, and to evaluate the conceptual relevance and acceptability of the EORTC QLQ-C30 and QLQ-H&N35 from a patient perspective for use in clinical trials. Methods A literature review and clinician interviews were conducted to inform in-depth semi-structured telephone interviews with US patients who had received treatment for recurrent and/or metastatic HNSCC in the preceding 12 months. Interview transcripts were analysed thematically using ATLAS.ti v7; patient quotes were coded to identify concepts and themes to develop a conceptual model of HNSCC experience. Results Fourteen patients were interviewed (71% male, aged 35–84 years). Patients reported few symptoms pre-diagnosis including neck lump/swelling (n = 7/14, 50%) and/or difficulty swallowing (n = 3/14, 21%). Treatments generally comprised surgery and chemotherapy and/or radiotherapy. A number of side effects from all treatments were reported. Numbness, difficulty speaking and pain were the most reported side effects of surgery (n = 4/8, 50%); weight loss and fatigue were the most reported side effects of chemotherapy and/or radiotherapy (n = 8/13, 61%). All side effects negatively impacted patients’ HRQoL. Patients generally found the QLQ-C30 and QLQ H&N35 content to be understandable and conceptually relevant; excessive mucous production and neuropathic symptoms were among the suggested additions. Conclusions HNSCC and its diverse symptoms and treatments have a negative impact on many aspects of patients’ lives. A number of reported symptoms including difficulty speaking and swallowing, localised pain and fatigue may be important for treatment benefit evaluation in clinical trials from a patient perspective. The QLQ-C30 and QLQ-H&N35 are generally relevant and suitable for use in clinical trials. However, some items could be amended/added to ensure conceptual comprehensiveness of these measures

Exploring beliefs about heart failure treatment in adherent and nonadherent patients: use of the repertory grid technique

William Neil Cottrell,1 Charles P Denaro,2,3 Lynne Emmerton1,41School of Pharmacy, University of Queensland, Brisbane, Qld, Australia; 2Department of Internal Medicine and Aged Care, The Royal Brisbane and Women's Hospital, Brisbane, Qld, Australia; 3School of Medicine, University of Queensland, Brisbane, Qld, Australia; 4Curtin Health Innovation Research Institute, School of Pharmacy, Curtin University, Perth, WA, AustraliaPurpose: Beliefs about medicines impact on adherence, but eliciting core beliefs about medicines in individual patients is difficult. One method that has the potential to elicit individual core beliefs is the "repertory grid technique." This study utilized the repertory grid technique to elicit individuals' beliefs about their heart failure treatment and to investigate whether generated constructs were different between adherent and nonadherent patients.Methods: Ninety-two patients with heart failure were interviewed using a structured questionnaire that applied the repertory grid technique. Patients were asked to compare and contrast their medicines and self-care activities for their heart failure. This lead to the generation of individual constructs (perceptions towards medicines), and from these, beliefs were elicited about their heart failure treatment, resulting in the generation of a repertory grid. Adherence was measured using the Medication Adherence Report Scale (MARS). Patients with a MARS score ≥ 23 were categorized as "adherent" and those with a score ≤ 22 as "nonadherent." The generated grids were analyzed descriptively and constructs from all grids themed and the frequency of these constructs compared between adherent and nonadherent patients.Results: Individual grids provided insight into the different beliefs that patients held about their heart failure treatment. The themed constructs "related to water," "affect the heart," "related to weight," and "benefit to the heart" occurred more frequently in adherent patients compared with nonadherent patients.Conclusion: The repertory grid technique elicited beliefs of individual participants about the treatment of their heart failure. Constructs from self-reported adherent patients were more likely to reflect that their medicines and self-care activities were related to water and weight, and affect and benefit to the heart. Providing clinicians with better insight into individuals' beliefs about their treatment may facilitate the development of tailored interventions to improve adherence.Keywords: adherence, heart failure, repertory grid, beliefs, treatmen

Quality of care of patients hospitalized with congestive heart failure

Background: Congestive heart failure (CHF) is an increasingly prevalent poor-prognosis condition for which effective interventions are available. It is -therefore important to determine the extent to which patients with CHF receive appropriate care in Australian hospitals and identify ways for improving suboptimal care, if it exists. Aim: To evaluate the quality of in-hospital acute care of patients with CHF using explicit quality indicators based on published guidelines. Methods: A retrospective case note review was -performed, involving 216 patients admitted to three teaching hospitals in Brisbane, Queensland, Australia, between October 2000 and April 2001. Outcome measures were process-of-care quality -indicators calculated as proportions of all, or strongly -eligible (ideal), patients who received -specific interventions. Results: Assessment of underlying causes and acute precipitating factors was undertaken in 86% and 76% of patients, respectively, and objective evaluation of left ventricular function was performed in 62% of patients. Prophylaxis for deep venous thrombosis (DVT) was used in only 29% of ideal patients. Proportions of ideal patients receiving pharmacological treatments at discharge were: (i) angiotensin--converting enzyme inhibitors (ACEi) (82%), (ii) target doses of ACEi (61%), (iii) alternative vasodilators in patients ineligible for ACEi (20%), (iv) beta-blockers (40%) and (v) warfarin (46%). Conclusions: Opportunities exist for improving quality of in-hospital care of patients with CHF, -particularly for optimal prescribing of: (i) DVT prophylaxis, (ii) ACEi, (iii) second-line vasodilators, (iv) beta-blockers and (v) warfarin. More research is needed to identify methods for improving quality of in-hospital care