Palliative medicine and neuromuscular disorders in adults- pilot symptom control clinic patient satisfaction and intervention efficacy

Purpose Although there is increasing advocacy for timely symptom control in patients with cancer, few studies have assessed outpatient palliative care clinics. This study assessed prospectively the efficacy of an Oncology Palliative Care Clinic (OPCC) in improving patient symptom distress and satisfaction. Patients and Methods Eligible patients were new referrals to an OPCC, had metastatic cancer, were at least 18 years old, and were well enough and able to speak and read English sufficiently to provide informed consent and complete questionnaires. Patients received a consultation by a palliative care team. The primary end points of symptom control and patient satisfaction were assessed using the Edmonton Symptom Assessment Scale (ESAS) and patient-adapted Family Satisfaction with Advanced Cancer Care (FAMCARE) scale at baseline, 1 week, and 1 month. Initial and follow-up scores were compared using paired t tests. Results Of 150 patients enrolled, 123 completed 1-week assessments, and 88 completed 4-week assessments. At baseline, the mean ESAS Distress Score (EDS) was 39.5. The mean improvement in EDS was 8.8 points (P < .0001) at 1 week and 7.0 points (P < .0001) at 1 month. Statistically significant improvements were observed for pain, fatigue, nausea, depression, anxiety, drowsiness, appetite, dyspnea, insomnia, and constipation at 1 week (all P ≤ .005) and 1 month (all P ≤ .05). The mean improvement in FAMCARE score was 6.1 points (P < .0001) at 1 week and 5.0 points (P < .0001) at 1 month. Conclusion This phase II study demonstrates efficacy of an OPCC for improvement of symptom control and patient satisfaction with care. Randomized controlled trials are indicated to further evaluate the effectiveness of specialized outpatient palliative care.

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Supportive Care Needs of Patients with Head and Neck Cancer Referred to Palliative Medicine

Otolaryngology ◽

10.1177/0194599820912029 ◽

2020 ◽

Vol 163 (2) ◽

pp. 356-363

Author(s):

Chen Lin ◽

Stephen Y. Kang ◽

Samantha Donermeyer ◽

Theodoros N. Teknos ◽

Sharla M. Wells-Di Gregorio

Keyword(s):

Quality Of Life ◽

Substance Use ◽

Head And Neck Cancer ◽

Supportive Care ◽

Head And Neck ◽

Neck Cancer ◽

Palliative Medicine ◽

Symptom Control ◽

Case Series

Objective Patients with head and neck cancer (HNC) face a unique set of unmet needs. A subset of these patients experience symptom control challenges related to their disease burden and treatments. A multidisciplinary approach involving palliative medicine is underutilized but crucial to identify and address these concerns. There is limited information on palliative integration with head and neck oncology. Study Design Case series with planned data collection. Setting Academic quaternary care center. Subjects and Methods We provide descriptive analyses of patients with HNC, including psychodiagnostic assessment and validated quality-of-life screening, from patients’ first encounter at outpatient palliative medicine. Results HNC (N = 80) contributed the greatest number of palliative referrals (25%) between 2010 and 2012. This cohort was 74% male and 79% Caucasian with a mean age of 53 years (95% CI, 51.1-54.9) and with stage IV disease of the oral cavity (28%) or oropharynx (31%). Sixty-three percent of patients had no evidence of disease. Seventy-five percent had a psychological history based on DSM-IV criteria ( Diagnostic and Statistical Manual of Mental Disorders, Fourth Edition), and 70% had a history of substance use disorder. The most distressing quality-of-life concerns were pain, housing and financial problems, and xerostomia. Conclusions Patients with HNC who were referred to palliative medicine are burdened by multiple physical, psychological, substance use, and social challenges. We recommend comprehensive cancer-specific screening, such as the James Supportive Care Screening, to triage patients to appropriate supportive care services. Palliative care is one of many services that these patients may need, and it should be utilized at any point of the disease trajectory rather than reserved for end-of-life care.

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A Preliminary Analysis of a Multidisciplinary Fibroid Clinic Patient Satisfaction and Demographics [10F]

Obstetrics and Gynecology ◽

10.1097/01.aog.0000665092.65219.17 ◽

2020 ◽

Vol 135 ◽

pp. 63S

Author(s):

Rebecca J. Josephson ◽

Joanna Hatfield ◽

Marci Messerle Forbes

Keyword(s):

Patient Satisfaction ◽

Preliminary Analysis ◽

Clinic Patient

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How satisfied are cervical dystonia patients after 3 years of botulinum toxin type A treatment? Results from a prospective, long-term observational study

Journal of Neurology ◽

10.1007/s00415-019-09527-2 ◽

2019 ◽

Vol 266 (12) ◽

pp. 3038-3046 ◽

Cited By ~ 8

Author(s):

Carlo Colosimo ◽

◽

David Charles ◽

Vijay P. Misra ◽

Pascal Maisonobe ◽

...

Keyword(s):

Patient Satisfaction ◽

Botulinum Toxin ◽

Observational Study ◽

Cervical Dystonia ◽

Treatment Cycle ◽

Symptom Control ◽

Type A ◽

Peak Effect ◽

End Of Treatment

Abstract Background Patients with cervical dystonia (CD) typically require regular injections of botulinum toxin to maintain symptomatic control. We aimed to document long-term patient satisfaction with CD symptom control in a large cohort of patients treated in routine practice. Methods This was a prospective, international, observational study (NCT01753349) following the course of adult CD treated with botulinum neurotoxin type A (BoNT-A) over 3 years. A comprehensive clinical assessment status was performed at each injection visit and subjects reported satisfaction in two ways: satisfaction with symptom control at peak effect and at the end of treatment cycle. Results Subject satisfaction remained relatively stable from the first to the last injection visit. At 3 years, 89.9% of subjects reported satisfaction with symptom control at peak effect and 55.6% reported satisfaction with symptom control at end of treatment cycle. By contrast, objective ratings of CD severity showed an overall reduction over 3 years. Mean ± SD Toronto Western Spasmodic Rating Scale (TWSTRS) Total scores (clinician assessed at end of treatment cycle) decreased from 31.59 ± 13.04 at baseline to 24.49 ± 12.43 at 3 years (mean ± SD reduction from baseline of − 6.97 ± 11.56 points). Tsui scale scores also showed gradual improvement; the percent of subjects with a tremor component score of 4 reduced from 12.4% at baseline to 8.1% at 3 years. Conclusions Despite objective clinical improvements over 3 years, subject satisfaction with symptom control remained relatively constant, indicating that factors other than symptom control also play a role in patient satisfaction.

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Improved Acromegaly Patient Satisfaction With Oral Octreotide Capsules Compared With Injectable Somatostatin Receptor Ligands in the MPOWERED Trial

Journal of the Endocrine Society ◽

10.1210/jendso/bvab048.1062 ◽

2021 ◽

Vol 5 (Supplement_1) ◽

pp. A520-A521

Author(s):

Murray B Gordon ◽

Maria Fleseriu ◽

Akexander V Dreval ◽

Yulia Pokramovich ◽

Irina Bondar ◽

...

Keyword(s):

Patient Satisfaction ◽

Injection Site ◽

Treatment Satisfaction ◽

Somatostatin Receptor ◽

Symptom Control ◽

Well Being ◽

Emotional Reaction ◽

Somatostatin Receptor Ligands ◽

Patient Reported ◽

Normal Mean

Abstract Background: Improved patient-reported outcomes (PROs) are increasingly becoming a key treatment objective in acromegaly. Validated PROs were used to assess disease and treatment burden in the MPOWERED phase 3 trial in acromegaly, which also assessed safety and efficacy of oral octreotide capsules (OOC; MYCAPSSA®) compared to injectable SRLs (iSRLs). Methods: Eligible patients had acromegaly diagnosis, biochemical control of acromegaly (insulin-like growth factor I <1.3 × upper limit of normal; mean integrated growth hormone, <2.5 ng/mL) and ≥6 months’ iSRL treatment (octreotide or lanreotide). Eligible patients entered a 26-week Run-in phase to determine the effective OOC dose; responders at week 24 then entered a 36-week randomized controlled treatment (RCT) phase receiving OOC or iSRLs in a 3:2 ratio. The Acromegaly Treatment Satisfaction Questionnaire (Acro-TSQ) is a recently validated tool that includes 27 items in 6 domain scores for PROs in acromegaly.1 Acro-TSQ data were collected at baseline (reflecting outcomes on iSRLs), end of Run-in (reflecting outcomes on OOC), and end of RCT (OOC or iSRLs). Results: Of 146 enrolled patients, 92 entered RCT (OOC, N=55; iSRLs, N=37). Acro-TSQ scores at the end of Run-in (26 weeks’ OOC treatment) were compared to baseline (iSRLs). In the 92 patients randomized, 3 of 5 Acro-TSQ domains (emotional reaction, treatment convenience, and treatment satisfaction) showed significant improvement at end of Run-in compared to baseline. Injection site interference was not assessed as no injection site reactions were observed with OOC. Other domains showed a nonstatistically significant pattern of improvement at end of Run-in when compared to baseline. Patients randomized to iSRLs in the RCT after receiving OOC in the Run-in (N=37) reported more anxiety (RCT end, 53%; Run-in end, 29%) and frustration (RCT end, 45%; Run-in end, 34%) with iSRLs compared to OOC. Overall treatment satisfaction was higher while receiving OOC (Run-in end, 92%; after receiving iSRLs in RCT, 75%). Breakthrough symptoms were reported more frequently with iSRLs (31%) than OOC (15%) at the end of RCT. Conclusion: Higher patient satisfaction, convenience and emotional well-being, and improved symptom control based on the newly validated Acro-TSQ PRO reporting tool were observed with OOC compared to iSRLs in patients enrolled in the MPOWERED trial. 1Fleseriu M, et al. Pituitary. 2020 Aug;23(4):347-358.

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Paediatric Palliative Medicine

10.1093/med/9780198745457.001.0001 ◽

2016 ◽

Author(s):

Richard Hain ◽

Satbir Jassal

Keyword(s):

Palliative Care ◽

Health Care Professionals ◽

Palliative Medicine ◽

Symptom Control ◽

Reference Drug ◽

Paediatric Palliative Care ◽

Management Plans ◽

Concise Information ◽

And Coping ◽

Reference Tool

Looking after children with life-limiting conditions can be very difficult for both parents and health-care professionals. This second edition of Paediatric Palliative Medicine is full of easily accessible, detailed information on medical conditions and symptoms, and includes specific management plans in order to guide the practising clinician through treatment of children requiring palliative care. Using the bestselling Oxford Specialist Handbook format to deliver practical and concise information, this handbook facilitates bedside delivery of effective palliative medicine. It includes detailed information on symptom control and the philosophy and models that support delivery of palliative medicine to children, while also covering practical delivery of palliative medicine relating to other professionals and families, and the learning and coping skills required in palliative care. It also contains a quick-reference drug formulary. Fully updated with an expanded formulary and a new chapter on the intensive care unit, this new edition continues to be the authoritative reference tool in paediatric palliative care.

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Palliative medicine in the emergency department: symptom control and aggressive care

BMJ Supportive & Palliative Care ◽

10.1136/bmjspcare-2021-003332 ◽

2021 ◽

pp. bmjspcare-2021-003332

Author(s):

Raquel de Oliveira ◽

Carolina B. Lobato ◽

Leonardo Maia-Moço ◽

Mariana Santos ◽

Sara Neves ◽

...

Keyword(s):

Emergency Department ◽

Palliative Care ◽

Palliative Medicine ◽

Symptom Control ◽

Well Being ◽

Blood Collection ◽

Intravenous Fluid Therapy ◽

Aggressive Care ◽

Aggressive Interventions ◽

Time Of Admission

ObjectivesIdentifying the prevalence of palliative care (PC) needs among patients who die at the emergency department (ED) and to assess symptom control and aggressiveness of care.MethodsWe conducted a decedent cohort study of adults deceased at the ED of a Portuguese teaching hospital in 2016. PC needs were identified using the National Hospice Organization terminality criteria and comorbidities measurement by the Charlson’s Index.Results384 adults died at the ED (median age 82 (IQR 72–89) years) and 78.4% (95% CI 73.9% to 82.2%) presented PC needs. Only 3.0% (n=9) were referred to the hospital PC team. 64.5%, 38.9% and 57.5% experienced dyspnoea, pain and confusion, respectively. Dyspnoea was commonly medicated (92%), against 56% for pain and 8% for confusion. Only 6.3% of the patients were spared from aggressive interventions, namely blood collection (86.0%) or intravenous fluid therapy (63.5%). The burden of aggressive interventions was similar between those with or without withhold cardiopulmonary resuscitation order (median 3 (2–4) vs 3 (2–5)), p=0.082.ConclusionsNearly four out of five adults who died at the ED had PC needs at the time of admission. Most experienced poor symptom control and care aggressiveness in their last hours of life and were mostly unknown to the PC team. The findings urge improvements in the care provided to patients with PC needs at the ED, focusing on patient well-being and increased PC referral.

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