Palliative care has become increasingly recognized as a crucial aspect of managing Parkinson’s Disease (PD), particularly in the advanced stages. Individuals with PD in later stages often experience challenges and palliative care needs comparable to those with cancer and other terminal illnesses [1, 2]. The World Health Organization (WHO) and the National Institute for Health and Care Excellence (NICE) in the UK advocate for integrating palliative interventions from the point of diagnosis, alongside active treatments, to address information management and advance care planning (ACP) [3, 4, 5, 6].
The Importance of Palliative Care Needs Assessment in PD
Providing equitable palliative care access for People with Parkinson’s (PwP) hinges on integrated care models [7]. This involves a dual approach: delivering a palliative care approach as part of standard PD management by non-specialists, and facilitating access to specialist palliative care (SPC) based on individual needs [8]. This mirrors palliative care delivery in other chronic conditions and relies on effectively identifying and prioritizing unmet needs by healthcare professionals who are not palliative care specialists.
Utilizing assessment tools to document unmet needs and track intervention outcomes in routine clinical settings is vital. These tools help evaluate the effectiveness of needs assessments, drive continuous improvements in patient outcomes, and inform service development strategies [9].
The optimal method for assessing unmet needs varies depending on the care setting and the stage of the patient’s journey. While comprehensive quantitative assessments might not be practical in a typical PD clinic, rapid screening tools can be valuable. Conversely, in specialized palliative care settings, quantifiable measures are essential for monitoring progress and treatment response. Therefore, different palliative assessment tools are needed to address varying needs throughout the PD trajectory.
Defining Needs Assessment in Palliative Care
A palliative care needs assessment tool serves as a structured framework to facilitate discussions about a patient’s comprehensive support and care requirements. It aids professionals in prioritizing actions and is beneficial for service audits and planning [10]. Systematic assessments are more effective than standard consultations or open-ended inquiries, leading to the identification of more symptoms and improved recognition of distressing symptoms [11]. Crucially, these assessments should adopt a holistic approach, encompassing not just medical aspects but also spiritual, psychological, and existential needs.
Integrated palliative care models have demonstrated improved patient outcomes in various conditions [12, 13]. While numerous general palliative care assessment tools exist for cancer patients [10] or primary care settings [12, 14], and some may include PwP [15, 16], this discussion will concentrate on tools specifically designed for individuals with Parkinson’s Disease.
Assessing palliative care needs in PD can be broken down into several key steps:
- Identifying individuals at high risk of unmet needs.
- Recognizing specific unmet needs.
- Evaluating the severity of unmet needs (quantification may be involved).
- Monitoring changes in needs and responses to interventions over time.
Identifying high-risk individuals is crucial for efficient resource allocation. While there is no universally accepted protocol for when to initiate palliative needs assessments in PD, a growing body of research has identified factors associated with poorer outcomes [17, 18]. Clinically, indicators such as visual hallucinations, reaching Hoehn and Yahr (H+Y) stage 3, and recurrent falls often prompt early consideration of unmet needs. Initiating this process before significant cognitive decline sets in is important to maximize patient autonomy and shared decision-making.
Types of Palliative Care Assessment Tools
Respondent Perspective
When selecting a needs assessment tool, the respondent is a key consideration. Patient-reported outcome measures (PROMs) directly capture patient experiences but may be less reliable in cases of cognitive impairment, a common challenge in PD [19, 20]. Proxy reports can offer an alternative, though careful interpretation is necessary [21].
Health-Related Quality of Life (HRQoL) vs. Needs Assessment
While many HRQoL tools exist for PD and are valuable for measuring overall well-being, they differ from needs assessments. Needs assessments aim to pinpoint the most pressing concerns for the individual, which should be prioritized in treatment planning [22].
Context and Setting
The most appropriate assessment tool is influenced by factors like the consultation setting (community or hospital), consultation focus (routine PD care or SPC), patient cognitive status, service structure (integrated or gateway to palliative care), assessment goals (clinical practice or research), and available time.
This article will focus on: (I) needs assessment tools specifically for PwP, distinct from HRQoL measures, (II) the characteristics of each tool, and (III) how these tools can be integrated into a comprehensive palliative care needs assessment strategy within an integrated PD care service. Symptom-specific measures, while relevant, are beyond the scope of this review, which centers on broader needs assessment.
A rapid review methodology was employed, with a single reviewer (ER) screening titles and abstracts from PubMed using the search terms “Parkinson(s)”, “Palliat.”, and “Assess.”. Grey literature, specifically the PhD thesis “Palliative care in Parkinson’s disease: development of a needs assessment tool” by Edward Richfield (University of Hull), also informed this narrative review of palliative care assessment tools for PwP.
General Palliative Care Assessment Tools Adapted for PD
Palliative Outcome Score-Symptoms-PD (POS-S PD)
Adapting existing palliative care tools is a common strategy for developing PD-specific instruments. The Palliative Outcome Scale (POS) [23], originally validated in cancer and later in non-malignant conditions like Multiple Sclerosis (MS) [24], is a well-established tool. The core POS comprises 10 items and serves as a foundation for extended versions like the POS-S. In POS-S, question 2 (“other symptoms”) is expanded with a symptom list relevant to the specific condition. A POS-S version has been validated for MS (POS-S-MS) [24], and a version for PD, the POS-S-PD [25], was subsequently developed. Publications using this tool sometimes refer to it as POS-PD or POS-PP, but they appear to describe the same instrument, now accessible online as POS-S-PD.
Independent validation for POS-S-PD is not yet published, although the core POS is well-validated across languages, and the POS-S extension principle is established in other conditions.
The POS-S-PD includes 20 questions covering motor and non-motor PD features, each rated by the patient from 0 (no effect) to 4 (overwhelming), yielding a maximum total score of 80. The Core-POS assesses 10 palliative care domains (pain, other symptoms, patient anxiety, family anxiety, information, support, depression, self-worth, wasted time, practical matters), also scored 0–4, with a maximum score of 40.
These tools were used in a cross-sectional study to describe symptom burden in later-stage PD (H+Y 3–5) [25]. The study population was relatively young (mean age 67, mean disease duration 9.7 years), possibly reflecting a tertiary care setting in South East England. Notably, care home residents were excluded, which is significant given the high rates of care home residence in advanced PD [27].
The study presented scores for both Core-POS (10 questions, max 40) and POS-S-PD (20 questions, max 80) as distinct but complementary assessments. Together, they cover a broad spectrum of potential palliative needs, mainly focused on the individual with PD, with only one question about family anxiety and no explicit caregiver needs assessment. A key advantage is their adaptability for patient or proxy completion.
A significant strength is the demonstrated responsiveness to change over time, shown in three assessments over 12–15 months in a group with consistent baseline characteristics (mean age 67, H+Y 3–5) [26].
IPOS neuro/IPOS NEURO-8
The IPOS NEURO [28] is another development from the POS family, specifically designed for neurological conditions. It assesses needs over the three days before assessment. It starts with a free-text prompt for main concerns, followed by 34 symptom questions, another free-text prompt for other symptoms, and 8 questions on other needs (patient and family anxiety, depression, peacefulness, sharing with friends, information, practical issues, wasted time).
Eight symptom domains (pain, spasms, shortness of breath, nausea, vomiting, mouth problems, sleep difficulties, constipation) were combined into the IPOS NEURO-8 symptom subscale [28], which underwent psychometric testing in patients with MS, PD, Progressive Supranuclear Palsy, and Multiple System Atrophy.
Construct validity and test-retest reliability for the IPOS NEURO-8 were evaluated using pooled data from an MS intervention trial and the longitudinal Parkinson’s Disease and Related Conditions (PDRC) symptom study – likely data from POS-S-PD scores. The PDRC patient characteristics are thus similar to the POS-S-PD study (H+Y 3–5, mean age 68, excluding care home residents).
Test-retest reliability at 6 weeks was deemed “fair” (Pearson’s correlation coefficient r=0.58). Construct validity showed moderate levels against the PDQ-8 (r=0.48, P<0.001).
Currently, judging the external validity is challenging. As a standalone tool, IPOS NEURO-8 has reasonable psychometric properties, but is limited by the study population, which doesn’t represent the full PD spectrum (excluding early stages and care home residents). The IPOS NEURO, which includes IPOS NEURO-8 as a subscale and is available as supplementary material, could be valuable due to its broader coverage of unmet needs, including social and psychological domains.
IPOS Neuro-s24
The same research group also published a factor analysis of the IPOS NEURO-s24 [29], a 24-symptom tool that includes the IPOS NEURO-8 symptoms. The full version is not currently available, so it’s unclear if it also covers social, spiritual, and caregiver domains beyond the 24 symptoms. Further publications are expected.
ESAS-PD
The Edmonton Symptom Assessment Scale for Parkinson’s Disease (ESAS-PD) [2] is adapted from the original ESAS [30], with 4 PD-specific domains added to the original 10. Modifications were made via a Delphi process (3 movement disorder specialists). Respondents (patient with or without caregiver help) rate the following on a 10-point scale: Pain, Tiredness, nausea, depression, anxiety, drowsiness, anorexia, wellbeing, shortness of breath, other problem, stiffness, constipation, dysphagia, and confusion. The maximum total score is 140.
ESAS-PD domains focus on patient experience, not caregiver burden. It is relatively brief compared to the POS-S-PD/Core POS combination (30 questions), reducing respondent burden.
Uniquely among these tools, ESAS-PD has published evidence of responsiveness to intervention. A study mapping unmet needs showed a significant reduction in ESAS-PD scores after intervention at a multidisciplinary clinic.
Like POS, the original ESAS is widely validated in cancer and some non-malignant conditions [31, 32, 33]. However, independent validation studies for ESAS-PD (separate from ESAS) are lacking. While responsiveness to intervention is demonstrated, test-retest and inter-rater reliability for ESAS-PD (as opposed to ESAS) are not established. Furthermore, while it measures symptom presence and severity, it doesn’t prioritize patient concerns.
Since its development, ESAS-PD has been used to describe palliative care burden in other PD cohorts [34] and is included in ongoing study protocols [35].
Palliative Care Assessment (PACA) Tool
The Palliative Care Assessment (PACA) tool [36] was initially developed in cancer care to assess the severity of patient-identified symptoms. It was used to evaluate symptom load in a PD incident cohort in northern England [1]. Participants first self-generated a list of symptoms and were then prompted with 35 additional common symptoms, both motor and non-motor. Each symptom was rated from 0 (not present) to 3 (present and dominating the day).
Because individuals rated varying numbers of symptoms, there is no total summative score.
The PACA tool was used in PwP, excluding atypical parkinsonian syndromes. The study population was representative, encompassing all H+Y stages, with a median age of 75.4 years. Of 161 patients, 38 did not participate, tending to be older, in nursing homes, or with more advanced disease, possibly due to the tool’s completion burden.
Factor analysis of pooled symptoms identified 11 factors, six of which correlated with the Unified Parkinson’s Disease Rating Scale (UPDRS) (r=0.33–0.58). Reliability characteristics were not assessed.
Administration time was not recorded but varied with the number of symptoms generated, with a maximum of 29 reported. The PACA tool, by allowing patients to identify their most pressing symptoms, offers a patient-centered approach to needs assessment in PD.
NAT:Parkinson’s Disease
The Needs Assessment Tool Progressive Disease: Cancer (NAT:PD-C), developed in Australia for cancer [37], was later adapted and validated for non-malignant conditions [38, 39, 40]. It has been adapted for PD as NAT:PD [41, 42].
NAT:PD differs from other tools in several ways. It is clinician-completed and does not generate a quantitative summary score. Instead, each domain is rated for concern level (0 no concern – 2 significant concern). If concerns are identified, clinicians are prompted to triage needs: self-managed, team-managed, or requiring external referral (including SPC). It starts with a prompt to identify PwP at higher risk of unmet needs and provides suggested phrasing for probing domains, useful for clinicians less familiar with this approach.
NAT:PD has 13 constructs within 3 domains: 1—patient wellbeing, 2—carer ability to care, 3—carer and family wellbeing. Constructs cover physical, psychological, spiritual, existential, financial, and interpersonal needs, and information needs. It is arguably the most holistic tool discussed, although IPOS NEURO covers similar domains. However, NAT:PD is clinician-rated and not an outcome measure, while IPOS NEURO is patient or clinician-rated and can be used as an outcome measure, potentially used together.
Construct validation of NAT:PD was conducted in a UK district general hospital population, with all disease stages (H+Y 1–5). Unlike POS-S-PD and IPOS NEURO 8, it excluded atypical parkinsonian syndromes in its validation.
Most constructs showed highly statistically significant correlations with primary comparator tools. Agreement was good (>0.6) for two constructs, moderate (0.4–0.6) for five, and fair (0.2–0.4) for four. Lower agreement levels are attributed to difficulty matching comparator tools to broad constructs. Convergent and divergent association patterns further support validity.
Inter-rater reliability was assessed using videoed, NAT:PD-guided consultations. Reliability was good for one construct, moderate for three, and fair for six. Three constructs did not achieve at least fair agreement, though two had very high percentage agreement. This is a Kappa anomaly, where high percentage agreement but imperfect agreement can yield poor Kappa [43]. The authors suggest interpreting Kappa with percentage agreement in such cases.
NAT:PD has been criticized for administration time [44], though this was not assessed in validation studies. It is designed for routine clinical use. Cancer studies of the parent tool showed no increase in consultation time in oncology clinics [45]. It could be combined with a patient-reported tool like IPOS NEURO 8 to highlight patient priorities and streamline consultations.
Caregiver Assessment
Informal caregivers of PwP often experience significant strain [46], especially related to non-motor symptoms [47], increasing with disease severity, and potentially impacting younger carers more [48]. Caregiver burden is extensively reviewed, including assessment tools [49]. Here, we summarize one PD-validated instrument and another commonly used in PwP studies.
Zarit Burden Interview (ZBI)
The Zarit Burden Interview (ZBI) [50] has 22 items assessing caregiver burden, each scored 0 (never) – 4 (almost always), totaling 88, with a score of 21 indicating significant burden. The full ZBI is validated in PD [51], with constructs showing satisfactory correlations (r=0.31–0.78).
These findings were closely replicated in another PD study [52], which also examined criterion validity of ZBI short forms (Zarit 12, 8, 7, 6, 4, and 1), using ZBI 22 as the gold standard. Short form scores were derived from the 22-item questionnaire, not separate administrations. However, good criterion validity (r=0.87–0.99) suggests potential for ZBI short forms in PD, especially for screening or when burden isn’t the primary variable.
Parkinson’s Disease Caregiver Burden (PDCB) Questionnaire
The Parkinson’s Disease Caregiver Burden (PDCB) questionnaire was developed specifically for PD based on interviews with PwP and caregivers [53]. It has 20 items in seven domains: Physical burden, sleep disruption, patient symptoms, responsibilities, patient medication, social burden, and patient-self relationship.
Face and content validity were checked with patient groups and experts. Internal consistency was good (Cronbach’s alpha 0.856), though the physical burden item was less reliable.
Construct validity, assessed against the Caregiver Burden Index (CBI), was very good for the overall score (r=0.773, P<0.001).
Caregiver quality of life (QoL) is another way to measure care impact. While outside this article’s scope, caregiver QoL tools specifically for PD [54] and atypical parkinsonism [55] exist.
Practical Application of Assessment Tools
In practice, assessment tool choice (Table 1) depends on the palliative care model and the individual being assessed. In PD, tools accommodating proxy or clinician assessment are crucial due to cognitive impairment. Patient-reported tools, like PACA, can prioritize patient concerns within needs assessments.
Table 1 Comparison of general palliative care assessments for PDRD
Consultation timing within the care model also dictates the time available and appropriate assessment type (Figure 1). A combination of tools at different points and tailored to patient characteristics is likely necessary.
Figure 1 Potential use of tools within integrated delivery of palliative care for Parkinson’s disease (PD).
Addressing the Palliative Assessment Challenge
Studies indicate a significant unmet palliative care need in PD [1, 2, 56], often overlooked by clinicians. Structured assessments are likely to reveal previously invisible palliative needs that current services may be unprepared to meet. Clinician education, training, support, and service provider commitment are essential. Implementation of Needs Assessment Tools for interstitial lung disease [39] and heart failure [38] showed that usual care teams need training in symptom identification, assessment, and management; psychosocial concern assessment; effective ACP communication; SPC referral initiation; and developing robust clinical pathways with SPC [57, 58].
Growing evidence identifying poor prognosis predictors in PD and future personalized prognostication [17, 18] present a significant challenge and will likely increase the need for earlier supportive interventions. Services must adapt to these challenges. Assessment tools, through research and service evaluation, can help estimate unmet need volume, identify priority areas for individual and service development, target resources, and assess intervention effectiveness, making them crucial for patient-centered care.
Conclusion
Various palliative care assessment tools, adapted or developed for PD, differ in domains, respondents, administration burden, and psychometric testing. Tool selection depends on setting, time, and disease stage. Increasing cognitive impairment in later PD highlights the value of tools allowing proxy and clinician responses.
A systematic, holistic needs assessment may require multiple tools used at different assessment stages for identification, detailed assessment, quantification, and change monitoring. Future research should explore how these tools can complement each other in practice and, most importantly, improve patient outcomes.
Acknowledgments
None.
Footnote
Conflicts of Interest: The authors have no conflicts of interest to declare.
Ethical Statement: The authors are accountable for all aspects of the work in ensuring that questions related to the accuracy or integrity of any part of the work are appropriately investigated and resolved.
References
Cite this article as: Richfield EW, Johnson MJ. Palliative care in Parkinson’s disease: review of needs assessment tools. Ann Palliat Med 2020;9(Suppl 1):S6-S15. doi: 10.21037/apm.2019.09.18
