Real-World Evaluation of the Feasibility, Acceptability and Safety of a Remote, Self-Management Parkinson's Disease Care Pathway: A Healthcare Improvement Initiative.

BACKGROUND: There is significant unmet need for effective and efficiently delivered care for people with Parkinson's disease (PwP). We undertook a service improvement initiative to co-develop and implement a new care pathway, Home Based Care (HBC), based on supported self-management, remote monitoring and the ability to trigger a healthcare contact when needed. OBJECTIVE: To evaluate feasibility, acceptability and safety of Home Based Care. METHODS: We evaluated data from the first 100 patients on HBC for 6 months. Patient monitoring, performed at baseline and 6-monthly, comprised motor (MDS-UPDRS II and accelerometer), non-motor (NMSQ, PDSS-2, HADS) and quality of life (PDQ) measures. Care quality was audited against Parkinson's UK national audit standards. Process measures captured feasibility. Acceptability was assessed using a mixed-methods approach comprising questionnaires and semi-structured interviews. RESULTS: Between October 2019 and January 2021, 108 PwP were enrolled onto HBC, with data from 100 being available at 6 months. Over 90% of all questionnaires were returned, 97% were complete or had < 3 missing items. Reporting and communications occurred within agreed timeframes. Compared with baseline, after 6m on HBC, PD symptoms were stable; more PwP felt listened to (90% vs. 79%) and able to seek help (79% vs. 68%). HBC met 93% of national audit criteria. Key themes from the interviews included autonomy and empowerment. CONCLUSIONS: We have demonstrated acceptability, feasibility and safety of our novel remotely delivered Parkinson's care pathway. Ensuring scalability will widen its reach and realize its benefits for underserved communities, enabling formal comparisons with standard care and cost-effectiveness evaluation.

The impact of changing risk thresholds on the number of people in England eligible for urgent investigation for possible cancer: an observational cross-sectional study.

BACKGROUND: Expediting cancer diagnosis may be achieved by targeted decreases in referral thresholds to increase numbers of patients referred for urgent investigation. METHODS: Clinical Practice Research Datalink data from England for 150,921 adults aged ≥40 were used to identify participants with features of possible cancer equating to risk thresholds ≥1%, ≥2% or ≥3% for breast, lung, colorectal, oesophago-gastric, pancreatic, renal, bladder, prostatic, ovarian, endometrial and laryngeal cancers. RESULTS: The mean age of participants was 60 (SD 13) years, with 73,643 males (49%). In 2016, 8576 consultation records contained coded features having a positive predictive value (PPV) of ≥3% for any of the 11 cancers. This equates to a rate of 5682/100,000 patients compared with 4601/100,000 Suspected Cancer NHS referrals for these cancers from April 2016-March 2017. Nine thousands two hundred ninety-one patient-consultation records had coded features equating to a ≥2% PPV, 8% more than met PPV ≥ 3%. Similarly, 19,517 had features with a PPV ≥ 1%, 136% higher than for PPV ≥ 3%. CONCLUSIONS: This study estimated the number of primary-care patients presenting at lower thresholds of cancer risk. The resource implications of liberalising this threshold to 2% are modest and manageable. The details across individual cancer sites should assist planning of English cancer services.

Changes in the presenting symptoms of lung cancer from 2000-2017: a serial cross-sectional study of observational records in UK primary care.

BACKGROUND: Most patients diagnosed with lung cancer present with symptoms. It is not known if the proportions of patients presenting with each symptom has changed over time. Identifying trends in lung cancer's presenting symptoms is important for medical education and early-diagnosis initiatives. AIM: To identify the first reported symptom of possible lung cancer (index symptom), and to test whether the percentages of patients with each index symptom changed during 2000-2017. DESIGN AND SETTING: This was a serial, cross-sectional, observational study using UK Clinical Practice Research Datalink (CPRD) data with cancer registry linkage. METHOD: The index symptom was identified for patients with an incident diagnosis of lung cancer in annual cohorts between 1 January 2000 and 31 December 2017. Searches were constrained to symptoms in National Institute for Health and Care Excellence (NICE) suspected-cancer referral guidelines, and to the year before diagnosis. Generalised linear models (with a binomial function) were used to test if the percentages of patients with each index symptom varied during 2000-2017. RESULTS: The percentage of patients with an index symptom of cough (odds ratio [OR] 1.01; 95% confidence interval [CI] = 1.00 to 1.02 per year; P<0.0001) or dyspnoea (OR 1.05; CI = 1.05 to 1.06 per year; P<0.0001) increased. The percentages of patients with other index symptoms decreased, notably haemoptysis (OR 0.93; CI = 0.92 to 0.95; P<0.0001) and appetite loss (OR 0.94; CI = 0.90 to 0.97; P<0.0001). CONCLUSION: During 2000-2017, the proportions of lung cancer patients with an index symptom of cough or dyspnoea increased, while the proportion of those with the index symptom haemoptysis decreased. This trend has implications for medical education and symptom awareness campaigns.

Association of Descriptors of Breathlessness With Diagnosis and Self-Reported Severity of Breathlessness in Patients With Advanced Chronic Obstructive Pulmonary Disease or Cancer.

CONTEXT: Verbal descriptors are important in understanding patients' experience of breathlessness. OBJECTIVES: The aim of this study was to examine the association between selection of breathlessness descriptors, diagnosis, self-reported severity of breathlessness and self-reported distress due to breathlessness. METHODS: We studied 132 patients grouped according to their diagnosis of advanced chronic obstructive pulmonary disease (n = 69) or advanced cancer (n = 63), self-reported severity of breathlessness as mild breathlessness (Numerical Rating Scale [NRS] ≤ 3, n = 53), moderate breathlessness (4 ≤ NRS ≥ 6, n = 59) or severe breathlessness (NRS ≥ 7, n = 20), and distress due to breathlessness as mild distress (NRS ≤ 3, n = 31), moderate distress (4 ≤ NRS ≥ 6, n = 44), or severe distress (NRS ≥ 7, n = 57). Patients selected three breathlessness descriptors. The relationship between descriptors selected and patient groups was evaluated by cluster analysis. RESULTS: Different combinations of clusters were associated with each diagnostic group; the cluster chest tightness was associated with cancer patients. The association of clusters with patient groups differed depending on their severity of breathlessness and their distress due to breathlessness. The air hunger cluster was associated with patients with moderate or severe breathlessness, and the chest tightness cluster was associated with patients with mild breathlessness. The air hunger cluster was associated with patients with severe distress due to breathlessness. CONCLUSION: The relationship between clusters and diagnosis is not robust enough to use the descriptors to identify the primary cause of breathlessness. Further work exploring how use of breathlessness descriptors reflects the severity of breathlessness and distress due to breathlessness could enable the descriptors to evaluate patient status and target interventions.

Comparison of respiratory health-related quality of life in patients with intractable breathlessness due to advanced cancer or advanced COPD.

OBJECTIVES: Breathlessness is common in patients with advanced cancer and almost universal in advanced chronic obstructive pulmonary disease (COPD), but studies suggest their experiences of breathlessness vary. This report builds on these studies by providing quantitative evidence of differences in respiratory health-related quality of life (HRQoL) between these groups. Further, it explores the validity of the Chronic Respiratory Questionnaire (CRQ) in patients with cancer. METHODS: The CRQ-Original was completed within baseline interviews for a randomised controlled trial of a palliative intervention for intractable breathlessness due to advanced disease. Independent samples Mann-Whitney U tests were performed to identify significant differences in median scores for the four CRQ domains (mastery, dyspnoea, emotional function, fatigue) in patients with advanced COPD (n=73) or advanced cancer (n=67). The Minimally Clinically Important Difference of 0.5 was applied to determine clinical significance. RESULTS: Patients with advanced COPD scored lower across all four CRQ domains. This was statistically significant for dyspnoea, mastery and emotional function (p<0.05), and clinically significant for the latter two, suggesting poorer respiratory HRQoL. CONCLUSIONS: Patients with breathlessness due to advanced COPD have worse respiratory HRQoL than those with advanced cancer. This may result from greater burden of breathlessness in COPD due to condition longevity, lesser burden of breathlessness in cancer due to its episodic nature, or variance in palliative referral thresholds by disease group. Our results suggest that greater access to palliative care is needed in advanced COPD, and that formal psychometric testing of the CRQ may be warranted in cancer. TRIAL REGISTRATION NUMBER: NCT00678405.