Development of a breast cancer specific patients concerns inventory (PCI)

Introduction Treating breast cancer is based on a combination of therapies: surgery, radiotherapy, chemotherapy, as well as hormonal and biological agents. The full impact of the disease and its treatment at a human level is often underestimated, and the benefits of holistic cancer care are increasingly recognised. Furthermore, patients often face a frightening and uncertain journey that presents a variety of needs. Moreover, recovery is not necessarily the end-point of the cancer experience. The many complexities and challenges in the identification of patient issues along this journey can lead to unmet needs. This can be particularly difficult in the confines of a busy clinic, where time constraints, together with an over-reliance on verbal communication, can pose significant barriers to effective consultations. A novel tool, known as the patient concerns inventory (PCI), has been successfully developed and introduced for use in patients with head and neck cancer. In this setting, it has helped to formulate an individualized record of patient concerns, needs, and priorities, thereby structuring outpatient consultations, and promoting and facilitating a multidisciplinary approach. This study aimed to develop and assess a PCI specific to breast cancer and to evaluate its impact on patient care; that is, to provide a “proof of concept” for a breast cancer PCI. Methods This was a four-phase study, as follows. (1) Item generation through a literature review, input from clinicians (n = 10), four patient focus groups (n = 24), and national breast cancer charities (n = 3). (2) A survey of breast cancer patients (n = 200) for cross-sectional validation, to compare the PCI with an established quality of life tool and to look at the relative frequency of items and any associations. (3) A pilot, before and after study, assessing the PCI in a clinical setting with breast cancer patients (n = 53). (4) Semi-structured interviews with a breast surgeon (n = 1) and specialist nurses (n = 2) who used the PCI during clinics, to identify the perceived benefits of using the PCI. Results In total 277 patients responded and participated in this work. The literature review identified 164 items; following input from clinicians, focus groups, and national charities, 56 items remained. The cross sectional study (phase 2; n=200, 80 % response rate) revealed that patients wanted to discuss the following: breast sensitivity or pain (46 %), fatigue (46 %), hot flushes (44 %), sleep (34 %); breast appearance (30 %), unable to control weight (28 %), mastectomy appearance (19 %), overall physical appearance (17 %); fear of recurrence (62 %), fear of cancer spreading (39 %), fear about the future (32 %), or one or more of these (72 %); ‘mood’ (15 %), ‘anxiety’ (21 %), ‘depression’ (17 %), or one or more of these (35 %); Phase 3 found that the PCI resulted in a focused consultation and no increase in consultation time. All the patients from phase 3 wanted to see a breast surgeon. Phase 4 revealed that clinicians involved with the PCI supported its use, and stated several advantages. In its final format, the breast cancer specific PCI had 57 items over several domains, with 16 referral options. Conclusions The PCI could identify issues that patients would like to discuss in the breast oncology clinic. The routine use of the PCI in follow-up clinics could ultimately improve care for women with breast cancer; however, the clinical environment continues to make it difficult to screen for issues related to intimacy, relationship, and sex. Further research is essential to evaluate the breast cancer specific PCI. A larger patient cohort, a longitudinal approach, qualitative input, and a link to possible interventions, would each improve our understanding of the issues faced by breast cancer patients

Health-related quality of life at 3 months following head and neck cancer treatment is a key predictor of longer-term outcome and of benefit from using the patient concerns inventory

INTRODUCTION: During clinical follow‐up it can be difficult to identify those head and neck cancer (HNC) patients who are coping poorly and could benefit from additional support. Health‐related quality of life (HRQOL) questionnaires and prompt lists provide a means by which patients can express their perceived outcomes and raise concerns. The first aim of this secondary analysis following a randomized trial was to explore which patient characteristics, at around 3 months following treatment completion (baseline), best predict HRQOL 12 months later. The second aim was to attempt to ascertain which patients were most likely to benefit from using prompt list. METHODS: Cluster‐controlled pragmatic trial data were analyzed. HRQOL was measured by the University of Washington Quality of life questionnaire (UW‐QOLv4). The prompt list was the Patient Concerns Inventory (PCI‐HN). RESULTS: The trial involved 15 eligible consultants and a median (inter‐quartile range) of 16 (13–26) primary HNC patients per consultant, with 140 PCI patients and 148 controls. Baseline HRQOL was the dominant predictor of 12‐month HRQOL with other predictors related to social, financial, and lifestyle characteristics as well as clinical stage and treatment. Although formal statistical tests for interaction were non‐significant the trend in analyses over a range of outcomes suggested that patients with worse baseline HRQOL could benefit more from the PCI‐HN. DISCUSSION: HRQOL early post‐treatment is a key predictor of longer‐term outcome. Measuring and using HRQOL and the PCI‐HN are not only surrogates for predicting HRQOL at 15 months post‐treatment, but also tools to help guide interventions

Social determinants of health-related quality of life outcomes for head and neck cancer patients

The influence of area-based and individual indicators of socioeconomic status (SES) on health-related quality of life (HRQOL) and patient concerns following head and neck cancer is complex and under-reported. The aim of this study is to use baseline data collected as part of a randomised controlled trial to provide greater detail on the attribution of SES to University of Washington Quality of Life version 4 (UWQOL v4), Distress Thermometer and European Quality of Life Five-Dimension Five-Level (EQ-5D-5L) outcomes. A total of 288 trial patients attended baseline clinics a median (Interquartile (IQR)) of 103 (71–162) days after the end of treatment. Area-based SES was assessed using the Index of Multiple Deprivation (IMD) 2019. Thirty-eight per cent (110/288) of patients lived in the most deprived IMD rank quintile. Less than good overall quality of life (31% overall) was associated with current working situation (p = 0.008), receipt of financial benefits (p < 0.001), total household income (p = 0.003) and use of tobacco (p = 0.001). Income and employment were significant patient level indicators predictors of HRQOL outcomes after case-mix adjustment. The number of Patient Concerns Inventory items selected varied significantly by overall clinical tumour clinical stage (p < 0.001) and by treatment (p < 0.001) but not by area IMD or patient-level deprivation indicators. In conclusion, interventions to improve employment and finance could make a substantial positive effect on HRQOL outcomes and concerns

The evaluation of training oral and maxillofacial trainees in head and neck cancer doctor-patient communication using the Patient Concerns Inventory.

AbstractHead and neck cancer has a significant impact on a patient’s health related quality of life (HRQOL). The head and neck specific Patient Concerns Inventory (PCI-HN) has been utilised to enhance doctor-patient dialogue in routine consultations. To date there has been no formal training for oral and maxillofacial surgery (OMFS) surgical trainees in the use of the PCI-HN in consultations. The aim of the study was to evaluate training for OMFS surgical trainees in the use of the PCI-HN, using simulated follow-up HNC consultations, in order to improve doctor-patient communication skills.Material and methodsTen oral and maxillofacial surgical trainees completed actor simulated HNC consultations before and after training. A study-specific mark scheme was developed based on the ComOn-Coaching rating scales and used to score the doctor-patient interaction. A group debrief afterwards explored the trainee’s experiences of the training and consultations. ResultsAll trainees showed an improvement in doctor-patient communication scores following their training. Overall, the six participants who were Specialty registrars, year 3 (ST3) or above, scored higher, than the four Specialty registrars, year 1-2 (ST1-2). The scores were higher if fewer PCI-HN items were discussed (3-4). The most frequently avoided PCI-HN items were intimacy and relationships. The trainees considered that their training was useful for organising their consultations and for providing holistic care. ConclusionAlthough training improved surgeon-patient communication, further evaluation is required with a larger number of trainees and actual consultations in clinic.<br/

An 82-year-old Caucasian man with a ductal prostate adenocarcinoma with unusual cystoscopic appearance: a case report

<p>Abstract</p> <p>Introduction</p> <p>Ductal adenocarcinoma is a rare variety of the common acinar adenocarcinoma. It usually presents with refractory symptoms, and during cystoscopy, it is seen as an exophytic lesion at the area of the verumontanum.</p> <p>Case presentation</p> <p>An 82-year-old Caucasian man was diagnosed with ductal adenocarcinoma of the prostate after undergoing transurethral resection of the prostate for urinary retention. Immunohistochemistry confirmed the nature of the tumor. The patient was treated with triptorelin, 3.75 mg once/month, and bicalutamide, 50 mg 1 × 1. The serum prostate-specific antigen at three, six and 12 months after transurethral resection of the prostate was 0.1 ng/ml. The patient remains asymptomatic, and he entered a six-month follow-up protocol.</p> <p>Conclusion</p> <p>Ductal adenocarcinoma often involves the central ducts of the gland and may present as an exophytic papillary lesion in the prostatic urethra. This is why it usually presents with refractory symptoms. The outcome for men with prostatic ductal adenocarcinoma is, in most studies, worse than the outcome for men with prostatic acinar adenocarcinoma. Aggressive management is indicated, even with low-volume metastatic disease.</p

Which Head and Neck Cancer Patients Are Most at Risk of High Levels of Fear of Cancer Recurrence

Background: Fear of cancer recurrence (FCR) is recognized as a common concern for patients with head and neck cancer (HNC). The aim of this study is to describe in greater detail the demographic and clinical characteristics of HCN patients who indicate a high level of FCR in their review consultation. Methods: A pragmatic cluster-controlled trial was conducted between January 2017 and December 2018 at two UK HNC centers (Leeds and Liverpool) to test the efficacy of a prompt tool called the Patient Concerns Inventory (PCI). Patients completed the PCI and the UW-QOLv4 which included a single 5 category rating of FCR. Secondary statistical analyses focused on variables associated with high FCR. Results: Two hundred and eighty-eight trial patients were recruited in this trial. At a median of 194 days after diagnosis and 103 days after the end of treatment 8% stated (n = 24) “I get a lot of fears of recurrence and these can really preoccupy my thoughts” and 3% (n = 8) “I am fearful all the time that my cancer might return, and I struggle with this.” Thus, 11% (n = 32) responded in the worst two categories, 95% Confidence interval 7.7–15.3% for high FCR. Stepwise logistic regression resulted in female gender (p < 0.001), age (p = 0.007), and receiving financial benefits (p = 0.01) as independent predictors. Conclusions: Around one in ten HNC patients attending routine outpatient follow-up consultations report high FCR, however for female patients under the age of 55 the rate was one in three. This group requires specialist attention and could be the focus of a multicenter intervention trial

Improving quality of life through the routine use of the Patient Concerns Inventory for head and neck cancer patients: a cluster preference randomized controlled trial

This trial is funded by the RfPB on behalf of the NIHR (PB-PG-0215-36047).Background: The consequences of treatment for Head and Neck cancer (HNC) patients has profound detrimental impacts such as impaired QOL, emotional distress, delayed recovery and frequent use of healthcare. The aim of this trial is to determine if the routine use of the Patients Concerns Inventory (PCI) package in review clinics during the first year following treatment can improve overall quality of life, reduce the social-emotional impact of cancer and reduce levels of distress. Furthermore, we aim to describe the economic costs and benefits of using the PCI. Methods: This will be a cluster preference randomised control trial with consultants either ‘using’ or ‘not using’ the PCI package at clinic. It will involve two centres Leeds and Liverpool. 416 eligible patients from at least 10 consultant clusters are required to show a clinically meaningful difference in the primary outcome. The primary outcome is the percentage of participants with less than good overall quality of life at the final one-year clinic as measured by the University of Washington QOL questionnaire version 4 (UWQOLv4). Secondary outcomes at one-year are the mean social-emotional subscale (UWQOLv4) score, Distress Thermometer (DT) score ≥ 4, and key health economic measures (QALY-EQ-5D-5 L; CSRI). Discussion: This trial will provide knowledge on the effectiveness of a consultation intervention package based around the PCI used at routine follow-up clinics following treatment of head and neck cancer with curative intent. If this intervention is (cost) effective for patients, the next step will be to promote wider use of this approach as standard care in clinical practice. Trial registration: 32,382. Clinical Trials Identifier, NCT03086629. Protocol: Version 3.0, 1st July 2017.Publisher PDFPeer reviewe

Improving quality of life through the routine use of the patient concerns inventory for head and neck cancer patients: main results of a cluster preference randomised controlled trial

Funding: UK National Institute for Health Research (NIHR) under its Research for Patient Benefit (RfPB) Programme (Grant Reference Number PB-PG-0215-36047).Purpose The patient concerns inventory (PCI) is a prompt list allowing head and neck cancer (HNC) patients to discuss issues that otherwise might be overlooked. This trial evaluated the effectiveness of using the PCI at routine outpatient clinics for one year after treatment on health-related QOL (HRQOL). Methods   A pragmatic cluster preference randomised control trial with 15 consultants, 8 ‘using’ and 7 ‘not using’ the PCI intervention. Patients treated with curative intent (all sites, disease stages, treatments) were eligible. Results   Consultants saw a median (inter-quartile range) 16 (13–26) patients, with 140 PCI and 148 control patients. Of the pre-specified outcomes, the 12-month results for the mean University of Washington Quality of Life (UW-QOLv4) social-emotional subscale score suggested a small clinical effect of intervention of 4.6 units (95% CI 0.2, 9.0), p = 0.04 after full adjustment for pre-stated case-mix. Results for UW-QOLv4 overall quality of life being less than good at 12 months (primary outcome) also favoured the PCI with a risk ratio of 0.83 (95% CI 0.66, 1.06) and absolute risk 4.8% (− 2.9%, 12.9%) but without achieving statistical significance. Other non-a-priori analyses, including all 12 UWQOL domains and at consultant level also suggested better HRQOL with PCI. Consultation times were unaffected and the number of items selected decreased over time. Conclusion   This novel trial supports the integration of the PCI approach into routine consultations as a simple low-cost means of benefiting HNC patients. It adds to a growing body of evidence supporting the use of patient prompt lists more generally.Publisher PDFPeer reviewe

Improving quality of life through the routine use of the patient concerns inventory for head and neck cancer patients : baseline results in a cluster preference randomised controlled trial

Funding: RfPB on behalf of the NIHR (PB-PG-0215-36047). This paper presents independent research funded by the National Institute for Health Research (NIHR) under its Research for Patient Benefit (RfPB) Programme (Grant Reference Number PB-PG-0215-36047).Purpose The main aim of this paper is to present baseline demographic and clinical characteristics and HRQOL in the two groups of the Patient Concerns Inventory (PCI) trial. The baseline PCI data will also be described. Methods This is a pragmatic cluster preference randomised control trial with 15 consultant clusters from two sites either ‘using' (n = 8) or ‘not using’ (n = 7) the PCI at a clinic for all of their trial patients. The PCI is a 56-item prompt list that helps patients raise concerns that otherwise might be missed. Eligibility was head and neck cancer patients treated with curative intent (all sites, stage of disease, treatments). Results From 511 patients first identified as eligible when screening for the multi-disciplinary tumour board meetings, 288 attended a first routine outpatient baseline study clinic after completion of their treatment, median (IQR) of 103 (71–162) days. At baseline, the two trial groups were similar in demographic and clinical characteristics as well as in HRQOL measures apart from differences in tumour location, tumour staging and mode of treatment. These exceptions were cluster (consultant) related to Maxillofacial and ENT consultants seeing different types of cases. Consultation times were similar, with PCI group times taking about 1 min longer on average (95% CL for the difference between means was from − 0.7 to + 2.2 min). Conclusion Using the PCI in routine post-treatment head and neck cancer clinics do not elongate consultations. Recruitment has finished but 12-month follow-up is still ongoing.Publisher PDFPeer reviewe