Identifying supportive and palliative care needs in people with Thoraciccancer: experience with the SPARC© questionnaire

Andrew Wilcock, Radka Klezlova, Sarah Coombes, Amanda Rawson, Rachel Hill, Doug Hooper, Matthew Maddocks

Department of Palliative Medicine, Nottingham University Hospitals NHS Trust, Nottingham,NG5 1PB.

Correspondence: Dr Andrew Wilcock DM FRCP, Hayward House Specialist Palliative Cancer Care Unit, Nottingham University Hospitals NHS Trust, CityHospital Campus, Nottingham, NG5 1PB, UK.

Tel: (+44) (0)115 962 7778

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Key words:assessment, need, palliative care, supportive care, thoracic cancer,

Word Count: 1984

ABSTRACT

Background: National guidelines in the United Kingdom recommend that patients with cancer have their supportive and palliative care needs assessed at key points, including at diagnosis.The Sheffield Profile for Assessment and Referral to Care (SPARC)questionnaire could contribute to this assessment.Because there are no reports of its use in patients with a recent diagnosis, we have undertaken a survey to explore its acceptability, the need it identifies and service implications.

Method:Patients within 4 weeks of their diagnosis of thoracic cancer were invited to complete the SPARCquestionnairetogether with a feedback formto indicate the appropriateness of the questionnaire and to provide comments.

Results:Of those approached, 86%took partand completed the questionnaire. Of the 100 patients analysed, only three considered theSPARCinappropriate. Of 22 comments made, only one related to some questions being potentially upsetting.Patients had a median [IQR] of 2 [0–5], 4 [2–7] and 8 [5–12] symptoms or issues which distressed or bothered them ‘very much’, ‘quite a bit’ and ‘a little’ respectively. Most common were feeling tired, shortness of breath and problems sleeping at night. Based on the developers’ recommendations, all 100 patients should be brought to the attention of the clinical team, with 24 and 63 requiring early and immediate attention respectively.

Conclusion: The SPARC questionnaire appears acceptable to the majority of patients with a recent diagnosis of thoracic cancer. Its use will help lung cancer teams focus their attention on the supportive and palliative care needscausing most distress.

INTRODUCTION

In the Unnnited Kingdom, aA key recommendation of the National Institute for Clinical Excellence guidance on improving supportive and palliative care for adults with cancer is that physical, psychological, social, spiritual and financial supportneeds are routinely assessed.[1]The National Cancer Action Team has produced guidance on the content of an holistic assessment and recommends that it is undertaken in people with lung cancer,as a minimum, around the time of diagnosis, on completion of primary treatment, when there is significant deterioration of symptoms and when dying is diagnosed.[2]The clinical team at each ‘key point’ is responsible for ensuring the assessment is undertaken as an integral part of patients’ care.The assessments should be patient ‘concerns-led’, generally follow a conversational style and take about 30 minutes.[2]Self-assessment is considered a useful way of identifying issues of particular concern for subsequent discussion with the assessor and several proformas or tools exist which could contribute to the assessment process.[2,3]One of these, the Sheffield Profile for Assessment and Referral to Care (SPARC), aims to assess need in order to identify those patients who may benefit from additional supportive and palliative care, either by their existing team, or by referral to specialist services.[4]Although developed in patients with a range of diagnoses, its use has not been reported in those recently diagnosed with thoracic cancer.Before adopting SPARCfor routine use in this group of patients locally, we have undertaken asurveyin order to explore its acceptability, the need it identifies and service implications.

METHODS

Subjects

The survey was conducted at Nottingham University Hospitals NHS Trust between December 2007 and May 2009, on an intermittent basis, as staffing allowed. During this period, patients attending oncology, respiratory, or surgical outpatient clinics with a recent histological diagnosis of thoraciccancer were identified by their medical records. Unless considered inappropriate to do so by clinical staff, e.g. because of confusion, patients were approached on a clinic visit 1–4 weeks after they were informed of their diagnosis, by a member of staff who was not a core member of the lung cancer team.All gave verbal informed consent and the survey was registered with the Trust Governance and Health Audit department (No. 775). This was considered appropriate because national guidelines recommend the evaluation of patients’ supportive and palliative care needs, with the SPARC given as a specific example of a tool which can contribute to this.1-3

Questionnaire

The SPARCquestionnaire is presented on two sides of a single sheet of A4 paper and begins with an explanatory paragraph: ‘We would like to know a bit more about you and your concerns. Please fill in this questionnaire (with help from a relative or carer if required) and return it to one of our team. There are no “right” or “wrong” answers. If you are unsure of a question, please leave it blank. Thank you.’ There follows 45 questions with 56 possible responses,covering seven areas of potential need: Communication and information issues (1question, up to 7 responses), Physical symptoms (21 questions), Psychological issues (9 questions), Religious and spiritual issues (2 questions), Independence and activity (3 questions), Family and social issues (4 questions), Treatment issues(2 questions) and Personal issues (3 questions, up to 8 responses). Finally, there is a free-text area for reporting any other concerns and a record of who completed the form (patient, carer or professional). Apart from two sections which have Yes / No responses (Communication and information issues, Personal issues) patientsare asked to rate the degree to which they have been distressed or bothered by the symptom or issue in the past month with four possible responses; 0 ‘Not at all’, 1 ‘A little bit’, 2 ‘Quite a bit’ and 3 ‘Very much’.The guidance accompanying the SPARC questionnaire It is recommendsed that patients scoring 1 or above for any item should be brought to the attention of the clinical team; scores of 2 require early attention, e.g. at the next meeting with the patient, and scores of 3 immediate attention.The developers note that the speed of response and the specific actions taken will depend on the clinical context, the duration of the problem and the level of supportive care already in place.

Protocol

Patients were invited to take part in the survey and asked to read an introductory cover note which explained the background to the survey, that their participation was voluntary, that not completing it would not alter their care, that the information would be used anonymously to help improve services and that the decision to share the findings with the clinical team was theirs. After verbal consent was obtained, patients were asked to complete the SPARC questionnaire, if necessary with the help of a carer or the member of staff in attendance. On completion, they were asked to record on a separate feedback form if they felt the questionnaire was appropriate, had any comments about the questions asked or any other comments. Patients were offered a copy of their completed SPARC questionnaire to share with the clinical team.

Analysis

The results wereanalysed using descriptive statistics. Comments relating to the questionnaire were grouped into themes. A convenience sample of 100 patients was considered appropriate given the centre diagnoses or treats about 600 new patients with thoracic cancer per annum.

RESULTS

Of 139patients approached, 119(86%)agreed to complete the questionnaire. The main reasonsfor declining were that taking part was ‘too much’ to consider (n=7) and insufficient time (n=6). The questionnaire was not supplied with the feedback form in 19 instances. Thus, the data presentedconsists of 100 patients who completed the SPARC and had the opportunity to provide formal feedback. This group contained 63 men and had a mean (SD) age of 68 (9) years; 70 had non-small cell cancer, 20 small cell cancer and 10mesothelioma.All were Caucasian and English was the first-language in all but two of Polish origin, both long-term residents in the United Kingdom.

Acceptability of the questionnaire

Once given the questionnaire, no patient declined to complete it. Of the 95 questionnaires on which it was noted, 65were completed by the patient alone and 22 and eight with the aid of a member of staff or carer respectively. The questionnaire was considered appropriate by 83 patients, not appropriate by 3, and 14 did not answer this question. In each of these categories, one or more additional free-text comments were made by 16, one and three patients respectively (table 1). The most frequent comment overall related to the relevance of the treatment sectionwhen treatment had not yet begun.

Of the maximum 56 responses, the median [interquartile range; IQR] number completed was 52 [47–54]. Patients were instructed to leave any questions they were unsure of blank. The most number of blanks related to one or more of the six possible responses to the question ‘Have you been able to talk to any of the following people about your condition?’ in the communication and information section (table 2).Free-text comments suggest that this may relate to the responses lacking clarity (table 1).

Needs identified

Table 2 summarizes the responses by category.All patients had one or more needs.Overall, for the five sections of the questionnaire which graded the degree of distress or bother, patients identified a median [IQR] of 2 [0–5], 4 [2–7], 8 [5–12] and 21 [16–28] symptoms/issues which distressed or bothered them ‘very much’, ‘quite a bit’, ‘a little bit’ and ‘not at all’ respectively. The top five symptoms or issues causing either ‘quite a bit’ or ‘very much’ distress or bother were feeling tired, shortness of breath, problems sleeping at night, cough and worrying about the effect of the illness on family or other people (table 2).

In response to the question ‘Have you been able to talk to any of the following people about your condition?’the ‘other people’consisted mainly of friends (table 2). In response to the question ‘Would you like any more information about the following?’ the only ‘other’ area specifically identified by one patient related to obtaining a Blue badge for parking concessions.

In the free text area of the questionnaire, six patients reported concerns relating to not being able to drive, difficulty parking at the hospital, scheduling of investigations or treatment, the proposed treatment and awareness that their condition was deteriorating.

Implications for the service

For 67, 24 and nine patients the highest reported level of distress or bother for a symptom or issue was ‘very much’, ‘quite a bit’ or ‘a little bit’ respectively. Thus, based on the existing recommendations, all 100 patients should be brought to the attention of the clinical team, with 24 requiring early attention and 67 immediate attention.Physical symptoms were the most frequent cause of high levels of distress or bother (table 3).

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DISCUSSION

Our results suggest that the SPARCquestionnaire is acceptable to the majority of patients with a recent diagnosis of thoracic cancer with only three out of 100 patients indicating that it was not appropriate. A clear explanation of the purpose of the questionnaire, the instruction to leave a question blank when unsure and the offer of help to complete it, taken up by about a fifth of patients, may all have contributed to its acceptability. For pragmatic reasons, we considered 100 an appropriate sample, recruiting periodically as staffing allowed. Selection bias is always a consideration in such surveys, but the refusal rate (14%) was relatively low, and the demographics of the recruited sample, e.g. age, sex and histology, was typical of the group of patients seen by the service. Our sample was predominantly Caucasian which also mirrors the usual referral pattern to the service. Acceptability of the SPARCquestionnaire to patients from other ethnic groups, or for those for whom English is not a first language requires further exploration.

Ten patients,who rated the questionnaire acceptableoverall, commented that some of the questions were either unclear, irrelevant, inappropriate or potentially upsetting.Thereappearsscope to improve the clarity of the set responses to the question ‘Have you been able to talk to any of the following people about your condition?’. The questions about treatment may become relevant whenthe assessment is repeated, as recommended, after completion of primary treatment.Given the wide range of issues the SPARCcovers, it is likely that some patients will find certain questions less appropriate to their situation and/or potentially upsetting.The ideal would be for a team member to be available to introduce the questionnaire and to provide supportwhen needed.

The questionnaire identified that patients had a median of six symptoms or issues causing ‘quite a bit’ or ‘very much’ distress or bother. This is in keeping with previous surveys which have underscored the high symptom and issue burden in patients with lung cancer, even around the time of diagnosis.[5-7]The top five symptoms or issues are similar to those reported in surveys of patients with lung and other cancers.[8]

Addressing unmet needs is important from a patient satisfaction and quality of life perspective.[9]As a consequence of the high symptom burden, based on current recommendations, all 100 patients should have been brought to the attention of thelung cancer team, with 24 and 67 requiring early or immediate attention respectively.Although these patients would have been seen by the service over a period of time, using these recommendationscould haveworkload, staffing and training implications for lung cancer teams. Lung cancer nurse specialists and other members of the lung cancer team will need to posses the necessary knowledge and skills to further evaluate and manage a wide range of symptoms or issues to at least a basic level.Meeting such a diverse range of needs will require facilitating patients and carers to develop their own support networks, good coordination between core members of the lung cancer team and the development of close working links with other disciplines and services, e.g. dietetics, occupational therapy, physiotherapy,primary care, psychology and specialist palliative care. Locally, for example, consultants in palliative medicine are present in some lung oncology clinics.

In conclusion,the SPARC questionnaire, as delivered in this survey, appears to be an acceptable way of identifying supportive and palliative care needs for the majority of patients with a recent diagnosis of thoracic cancer. How best to address the high level of need it reveals may present challengesto lung cancer services, but meeting these challenges is essential if patients are to receive high quality care.On the basis of our results, we have introduced the SPARC into routine practice, having increased the text size to improve readability.

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TABLES

Table 1. Appropriateness and free-text feedback (n=100)

Was the questionnaire appropriate? (n) / Free-text comments made (n) / Comments (n with similar theme)
Yes (83) / 16 / Positive comments regarding the questionnaire, e.g. good questions, simple to complete, comprehensive (6).
Given too early, not started treatment yet (5).
Response options in communication and information issues not clear (2).
Good that I did not have to answer questions I did not want to.
Difficult to complete; small print.
Specific questions considered inappropriate; sexual function (spouse in nursing home); religious needs (atheist).
Unspecified questions considered potentially upsetting to patient by spouse completing questionnaire.
Left blank (14) / 3 / Not started chemotherapy yet which may alter the response (2).
I may have different answers on different days.
No (3) / 1 / Not had any treatment yet, or know the extent of my illness.

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Table 2. Summary of responses (n=100)

Communication and information issues
Have you been able to talk to any of the following people about your condition?
Yes / No / Blank
a. Your doctor / 69 / 22 / 9
b. Community nurse / 23 / 45 / 32
c. Hospital nurse / 60 / 15 / 25
d. Religious advisor / 4 / 55 / 41
e. Social worker / 13 / 51 / 36
f. Family / 74 / 5 / 21
g. Other people (please state) / 21 / 34 / 45
Physical symptoms
In the past month have you been distressed or bothered by
Not at all / A little bit / Quite a bit / Very much / Blank
Pain? / 30 / 24 / 25 / 16 / 5
Loss of memory? / 73 / 15 / 2 / 2 / 8
Headache? / 57 / 24 / 7 / 0 / 12
Dry mouth? / 31 / 32 / 23 / 7 / 7
Sore mouth? / 66 / 8 / 6 / 8 / 12
Shortness of breath? / 23 / 26 / 21 / 28 / 2
Cough? / 28 / 28 / 22 / 20 / 2
Feeling sick (nausea)? / 51 / 29 / 9 / 5 / 6
Being sick (vomiting)? / 73 / 12 / 1 / 1 / 13
Bowel problems (e.g. constipation, diarrhoea or incontinence)? / 45 / 22 / 17 / 11 / 5
Bladder problems (urinary incontinence)? / 71 / 13 / 5 / 1 / 10
Feeling weak? / 32 / 31 / 17 / 19 / 1
Feeling tired? / 15 / 31 / 24 / 28 / 2
Problems sleeping at night? / 28 / 21 / 14 / 33 / 4
Feeling sleepy during the day? / 19 / 43 / 21 / 14 / 4
Loss of appetite? / 39 / 26 / 17 / 14 / 4
Changes in your weight? / 36 / 28 / 14 / 15 / 7
Problems with swallowing? / 75 / 11 / 3 / 4 / 7
Being concerned about changes in your appearance? / 59 / 17 / 13 / 2 / 9
Feeling restless and agitated? / 45 / 27 / 12 / 7 / 9
Feeling that your symptoms are not controlled? / 51 / 17 / 14 / 9 / 9
Psychological issues
In the past month have you been distressed or bothered by
Not at all / A little bit / Quite a bit / Very much / Blank
Feeling anxious? / 32 / 30 / 20 / 14 / 4
Feeling as if you are in a low mood? / 35 / 35 / 15 / 11 / 4
Feeling confused? / 64 / 17 / 7 / 7 / 5
Feeling unable to concentrate? / 49 / 27 / 10 / 10 / 4
Feeling lonely? / 66 / 14 / 9 / 5 / 6
Feeling everything is an effort? / 38 / 29 / 12 / 16 / 5
Feeling life is not worth living? / 79 / 6 / 5 / 3 / 7
Thoughts about ending it all? / 87 / 4 / 1 / 1 / 7
The effect of your condition on your sexual life? / 73 / 6 / 5 / 5 / 11
Religious and spiritual issues
In the past month have you been distressed or bothered by
Not at all / A little bit / Quite a bit / Very much / Blank
Worrying thoughts about death and dying? / 52 / 26 / 7 / 7 / 8
Religious or spiritual needs not being met? / 87 / 3 / 0 / 0 / 10
Independence and activity
In the past month have you been distressed or bothered by
Not at all / A little bit / Quite a bit / Very much / Blank
Losing your independence? / 56 / 20 / 8 / 8 / 8
Changes in your ability to carry out your usual daily activities, e.g. washing, bathing, or going to the toilet? / 51 / 20 / 13 / 9 / 7
Changes in your ability to carry out your usual household tasks, e.g. cooking for yourself or cleaning the house? / 46 / 22 / 15 / 10 / 7
Family and social issues
In the past month have you been distressed or bothered by
Not at all / A little bit / Quite a bit / Very much / Blank
Feeling that people do not understand what you want? / 73 / 11 / 4 / 3 / 9
Worrying about the effect your illness is having on other people? / 21 / 32 / 19 / 23 / 5
Lack of support from your family or other people? / 89 / 2 / 1 / 0 / 8
Needing more help than your family or other people could give? / 74 / 11 / 5 / 1 / 9
Treatment issues
In the past month have you been distressed or bothered by
Not at all / A little bit / Quite a bit / Very much / Blank
Side effects of your treatment? / 55 / 11 / 12 / 7 / 15
Worrying about long term effects of your treatment? / 48 / 17 / 13 / 8 / 14
Personal issues
Yes / No / Blank
Do you need any help with your personal affairs? / 7 / 86 / 6
Would you like to talk to another professional about your condition or treatment? / 13 / 77 / 10
Would you like any more information about the following?
a. Your condition / 30 / 59 / 11
b. Your care / 24 / 65 / 11
c. Your treatment / 35 / 50 / 15
d. Other types of support / 26 / 60 / 14
e. Financial issues / 14 / 69 / 17
f. Other (please state) / 2 / 39 / 59

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