University of Wollongong Research Online Australian Health Services Research Institute Faculty of Business 1 Patient and carer experiences: palliative care services national survey report: November 1 - PCOC University of Wollongong Publication Details PCOC, Patient and carer experiences: palliative care services national survey report: November 1 (Centre for Health Service Development, University of Wollongong, 1). http://ahsri.uow.edu.au/content/groups/public/@web/@chsd/@pcoc/ documents/doc/uow91299.pdf Research Online is the open access institutional repository for the University of Wollongong. For further information contact the UOW Library: research-pubs@uow.edu.au
Patient and carer experiences: palliative care services national survey report: November 1 Abstract Two surveys were made available to palliative care services to administer as a quality assessment process aimed at improving patient/carer outcomes. The questionnaire designed for patient experience aims to provide a reflection of response to need and patient experiences. The questionnaire for carers is designed to capture a profile of the carer and important elements of their experiences. Keywords PCOC, carer, patient, november, 1, report, services, care, palliative, experiences, survey, national Publication Details PCOC, Patient and carer experiences: palliative care services national survey report: November 1 (Centre for Health Service Development, University of Wollongong, 1). http://ahsri.uow.edu.au/content/ groups/public/@web/@chsd/@pcoc/documents/doc/uow91299.pdf This report is available at Research Online: http://ro.uow.edu.au/ahsri/46
Patient and Carer Experiences Palliative Care Services National Survey Report November 1 PCOC is funded under the National Palliative Care Program and is supported by the Australian Government Department of Health and Ageing
Palliative Care Outcomes Collaboration (PCOC) PCOC is a voluntary quality initiative to assist palliative care service providers to improve practice and is funded under the National Palliative Care Program and is supported by the Australian Government Department of Health and Ageing. PCOC is a collaboration between four centres and is divided into four zones for the purpose of engaging with palliative care service providers. The four PCOC zones and partners are: Centre for Health Service Development, University of Wollongong PCOC Central Cancer and Palliative Care Research and Evaluation Unit, University of Western Australia PCOC West Department of Palliative and Supportive Services, Flinders University of South Australia PCOC South Institute of Health and Biomedical Innovation, Queensland University of Technology - PCOC North Contact details for PCOC are available at http://chsd.uow.edu.au/pcoc/
Table of Contents Introduction... 1 Patient experiences - survey results... 2 Age and Gender... 2 Cultural Background... 3 Question 1 - Over the past 3 days, have you been affected by pain?... 3 Question 2 - Over the past 3 days, have other symptoms (eg, feeling sick, having a cough or constipation) been affecting how you feel?... 4 Question 3 - Over the past 3 days, have you been feeling anxious or worried about your illness or treatment?... 4 Question 4 - Over the past 3 days, have any of your family or friends been anxious or worried about you?... 5 Question 5 - Over the past 3 days, how much information have you and your family or friends been given?... 5 Question 6 - Over the past 3 days, have you been able to share how you are feeling with your family or friends?... 6 Question 7 - Over the past 3 days, have you been feeling depressed?... 6 Question 8 - Over the past 3 days, have you felt good about yourself as a person... 7 Question 9 - Over the past 3 days, how much time do you feel has been wasted on appointments relating to your health care (e.g. waiting around for transport or repeating tests)?... 7 Question 1 - Over the past 3 days, have any practical matters resulting from your illness, either financial or personal, been addressed?... 8 Question 11 - If any, what have been your main problems in the last three days?... 8 Question 12 - How did you complete these questions?... 8 Carer experiences - survey results... 9 Age and Gender... 9 Cultural Background... 1 Question1 - The patients comfort... 11 Question 2 - The way in which the patient s condition and likely progress have been explained by the palliative care team... 11 Question 3 - Information given about side effects of treatment... 11 Question 4 - The way in which the palliative care team respects the patient s dignity... 11 Question 5 - Meetings with the palliative care team to discuss the patient s condition and plan of care... 12 Question 6 - Speed with which symptoms are treated... 12 Question 7 - Palliative care team s attention to the patient s description of symptoms... 12 Question 8 - The way in which the patient s physical needs for comfort are met... 12 Question 9 - Availability of the palliative care team to the family... 13 Question 1 - Emotional support provided to family members by the palliative care team... 13 Question 11 - The practical assistance provided by the palliative care team (e.g, bathing, home care, respite)... 13 Question 12 - The doctor s attention to the patient s symptoms... 13 Question 13 - The way the family is included in treatment and care decisions... 14 Question 14 - Information given about how to manage the patient s symptoms (eg., pain, constipation)... 14 Question 15 - How effectively the palliative care team manages the patient s symptoms... 14 Question 16 - The palliative care team s response to changes in the patient s care needs... 14 Question 17 - Emotional support provided to the patient by the palliative care team... 15
Have you had someone to help you with practical tasks?... 16 Did anyone give you information on whether you would qualify for a Carer Payment or Allowance?... 16 Did someone give you information about available support services?... 17 Did someone give you practical training in lifting, managing medicine or other tasks?... 17 Acknowledgements......18 List of Tables Table 1 Gender by age group... 2 Table 2 Pain... 3 Table 3 Other symptoms... 4 Table 4 Anxiety or worry... 4 Table 5 Family/friends anxiety or worry... 5 Table 6 Information received... 5 Table 7 Sharing feelings with family or friends... 6 Table 8 Feeling depressed... 6 Table 9 Felt good about yourself as a person?... 7 Table 1 Time wasted... 7 Table 11 Addressing of practical matters... 8 Table 12 How did you complete these questions?... 8 Table 13 Gender by age group... 9 Table 14 Practical tasks?... 16 Table 15 Carer Payment or Allowance?... 16 Table 16 Support services?... 17 Table 17 Did someone give you practical training in lifting, managing medicine or other tasks?... 17
Introduction Two surveys were made available to palliative care services to administer as a quality assessment process aimed at improving patient/carer outcomes. The questionnaire designed for patient experience aims to provide a reflection of response to need and patient experiences. The questionnaire for carers is designed to capture a profile of the carer and important elements of their experiences. The tools used were the Patient Outcome Scale (POS) 2 and FAMCARE 2. The first ten questions of the POS 2 are slightly modified from the POS developed by Higginson and colleagues 1. The original question 11 in the scale has been substituted with a question from the McGill Quality of Life Scale (Cohen 1997 2 ). This question is included to let us know if there are things that have not been asked about, but which are important for some patients quality of life. There are two versions of the survey instrument. One is for completion by those patients able to participate. The other is a staff-rated version for those patients who are not well enough to complete their own survey. The original FAMCARE 3 was devised to ask family members to list indicators of quality of palliative care from their perspective and the patient s perspective. The list includes items relating to the availability of care, the quality of patient care and psycho-social issues. In addition to the questions, four questions have been added to FAMCARE to measure more practical issues relating to being a carer such as whether or not the carer was aware of the availability of a Carer Payment or whether they have received help with practical tasks. These questions have been tested and are now routinely collected in the Ongoing Needs Identification (ONI) tool used in community care services in NSW and Queensland 4. Services were asked to provide PCOC with a minimum of survey forms for the patient experience survey and the carer satisfaction survey for analysis. Twelve services nationally participated in the PCOC Patient and Carers Experiences surveys during 1. Ethics approval was received from the University of Wollongong Human Research Ethics Committee, proposal number HE6/45. Some services also approached their local HREC s for approval. 1 Hearn J and Higginson IJ (1999) Development and validation of a core outcome measure for palliative care: the palliative care outcome scale. Palliative Care Core Audit Project Advisory Group. Qual Health Care. Vol 8, No 4, 219-27 2 Cohen R, Mount BM, Strobel M and Bui F (1995) The McGill Quality of Life Questionnaire: A Measure of Quality of Life Appropriate for People with Advanced Disease. Palliative Medicine, Vol 9, 7-219 3 {Kristjanson LJ (1993) Validity and reliability testing of the FAMCARE Scale: measuring family satisfaction with advanced cancer care. Soc Sci Med, Vol.36, No.5, 693-71. 4 Owen A, Ramsay L, Holt N and Eagar K (4) Ongoing Needs Identification In Queensland Community Care: Why Use the Tier 1 Screening and Referral Tools - Evidence and Explanations. Centre for Health Service Development, University of Wollongong. PCOC Patient and Carer National Survey 1 Page 1 of 18
Patient experiences - survey results Twelve services nationally participated in the PCOC Patient Experiences survey during 1. In total, 382 patients participated in the survey. The following Tables/Figures present the aggregated national results from the 1 survey. Age and Gender Fifty seven percent of respondents were male and the average age for males was 7 yrs whilst the average age for females was 66. Table 1 shows the age and the gender of all respondents. Table 1 Gender by age group Age group Male % Female % < 15.. 15-24 1.6. 25-34. 2 1.3 35-44 3 1.7 5 3.3 45-54 18 1.1 18 11.8 55-64 28 15.6 39 25.5 65-74 65 36.3 5 32.7 75-84 5 27.9 27 17.7 85+ 14 7.8 12 7.8 Total 179. 153. Note: records where either age or gender were not recorded or inadequately described are excluded from the table. PCOC Patient and Carer National Survey 1 Page 2 of 18
Cultural Background All respondents (n=382) addressed the question relating to ethnicity. Of these 5 (13%) identified themselves as being from a particular ethnic origin or cultural background. Four identified themselves as being of Aboriginal or Torres Strait Island origin. Question 1 - Over the past 3 days, have you been affected by pain? Just over one third of all patients (34%) had moderate pain that limited some activity. One fifth (%) had severe or overwhelming pain that markedly affected their activities or concentration or they were unable to think of anything else and 21% reported no pain. Table 2 Pain Not at all, no effect 78.6 Slightly but not bothered to be rid of it 8 21.1 Moderately pain limits some activity 129 34. Severely activities or concentration markedly affected 74 19.5 Overwhelmingly unable to think of anything else 18 4.8 Total 379. Not stated/inadequately described 3 PCOC Patient and Carer National Survey 1 Page 3 of 18
Question 2 - Over the past 3 days, have other symptoms (eg. feeling sick, having a cough or constipation) been affecting how you feel? Just under two thirds of all patients (62%) had other symptoms that affected the way they felt either slightly or moderately. Approximately 14% of all patients had severe or overwhelming symptoms that affected the way that they felt. Almost one quarter of all patients (24%) had no other symptoms that affected how they felt. Table 3 Other symptoms Not at all 92 24.2 Slightly 99 26. Moderately 137 36. Severely 45 11.8 Overwhelmingly 8 2.1 Total 381. Not stated/inadequately described 1 Question 3 - Over the past 3 days, have you been feeling anxious or worried about your illness or treatment? Approximately 15% of patients were so worried or anxious about their illness or treatment that it affected their concentration most of the time while a further 5% were so preoccupied with worry and anxiety that they could not think of anything else. Almost one quarter of all patients (24%) did not report any issues relating to worry and anxiety. Table 4 Anxiety or worry Not at all 89 23.5 Occasionally 119 31.5 Sometimes affects my concentration now and then 93 24.6 Most of the time often affects my concentration 57 15.1 Can t think of anything else completely preoccupied by worry and anxiety 5.3 Total 378. Not stated/inadequately described 4 PCOC Patient and Carer National Survey 1 Page 4 of 18
Question 4 - Over the past 3 days, have any of your family or friends been anxious or worried about you? More than one quarter of all patients (27%) reported that their family and friends were anxious or worried about them most of the time whilst 11% reported their family or friends were always preoccupied with worry about them. Under one third (29%) reported that their family or friends were occasionally anxious or worried about them or was not an issue. Table 5 Family/friends anxiety or worry Not at all 48 12.8 Occasionally 11 29.3 Sometimes it seems to affect their concentration 74 19.7 Most of the time 13 27.4 Yes, always preoccupied with worry about me 41 1.9 Total 376. Not stated/inadequately described 6 Question 5 - Over the past 3 days, how much information have you and your family or friends been given? Just over 7% of all respondents felt that they or their family or friends received full information and were always free to ask further questions while 3% did not. In total, 9% found the information they were given hard to understand, 6% wanted more information and 12% reported receiving no information at all. Table 6 Information received Full information always feel free to ask what I want 262 7.6 Information given but hard to understand 32 8.6 Information given on request but would have liked more 22 5.9 Very little given and some questions were avoided 1 2.7 None at all 45 12.1 Total 371. Not stated/inadequately described 11 PCOC Patient and Carer National Survey 1 Page 5 of 18
Question 6 - Over the past 3 days, have you been able to share how you are feeling with your family or friends? Just under two thirds of all patients (61%) had been able to share how they were feeling with family/friends as much as they wanted with another 18% able to share their feelings most of the time. A further 11% of patients felt that they could share their feelings sometimes and 6% occasionally. Five percent of patients felt that they were not able to share their feelings at all. Table 7 Sharing feelings with family or friends Yes, as much as I wanted 231 61.1 Most of the time 69 18.3 Sometimes 1.6 Occasionally 21 5.6 Not at all with anyone 17 4.5 Total 378. Not stated/inadequately described 4 Question 7 - Over the past 3 days, have you been feeling depressed? Over half of all patients (57%) felt depressed occasionally or sometimes with another 33% not feeling depressed at all. However, 5% had been feeling depressed most of the time. Table 8 Feeling depressed No, not at all 125 33. Occasionally 129 34. Sometimes 87 23. Most of the time 17 4.5 Yes, definitely 21 5.5 Total 379. Not stated/inadequately described 3 PCOC Patient and Carer National Survey 1 Page 6 of 18
Question 8 - Over the past 3 days, have you felt good about yourself as a person Just under two thirds (61%) of all patients felt good about themselves most of the time or all the time. Just under one in ten (9%) felt good about themselves occasionally with a further 7% not feeling good about themselves at all. Table 9 Felt good about yourself as a person? Yes, all of the time 79 21.2 Most of the time 147 39.5 Sometimes 86 23.1 Occasionally 35 9.4 No, not at all 25 6.7 Total 372. Not stated/inadequately described 1 Question 9 - Over the past 3 days, how much time do you feel has been wasted on appointments relating to your health care (eg. waiting around for transport or repeating tests)? Overwhelmingly, most patients (88%) had no time wasted on health care appointments in the previous three days. However, 12% felt that they had wasted up to half a day or more on health care appointments. Table 1 Time wasted None at all 327 88.1 Up to half a day wasted 31 8.4 More than half a day wasted 13 3.5 Total 371. Not stated/inadequately described 11 PCOC Patient and Carer National Survey 1 Page 7 of 18
Question 1 - Over the past 3 days, have any practical matters resulting from your illness, either financial or personal, been addressed? Overall, there was little evidence of patients having problems in relation to their financial and personal affairs, with only 2% reporting that these matters were not being addressed. Over three quarters (79%) had their practical matters either up to date or in the process of being addressed. Almost one fifth (18%) had no practical problems. Table 11 Addressing of practical matters Practical problems have been addressed and my affairs are as up to date as I would wish 7 55.5 Practical problems are in the process of being addressed 89 23.9 Practical problems exist which were not addressed 9 2.4 I have had no practical problems 68 18.2 Total 373. Not stated/inadequately described 9 Question 11 - If any, what have been your main problems in the last three days? Written responses for this open question were returned to participating services. Question 12 - How did you complete these questions? Patients could elect to complete the survey on their own or with the help of someone else. Approximately one in ten surveys were completed with the help of a member of the palliative care team while approximately 9% of patients completed the survey on their own or with the help of a friend or family. Table 12 How did you complete these questions? On my own 163 5.6 With the help of a friend or relative 125 38.8 With help from a member of staff 34 1.6 Total 322. Not stated/inadequately described 6 PCOC Patient and Carer National Survey 1 Page 8 of 18
Carer experiences - survey results Twelve services nationally participated in the PCOC Carer Experiences survey during 1. In total, 348 carers participated in the 1 survey. The following Tables/Figures present the aggregated national results from the 1 survey. Age and Gender Thirty percent of respondents were male and the average age for males was 64 yrs whilst the average age for females was 6. Table 1 shows the age and the gender of all respondents. Table 13 Gender by age group Age group Male % Female % < 15.. 15-24 1 1.1 1.5 25-34. 5 2.3 35-44 6 6.6 21 9.8 45-54 14 15.4 36 16.8 55-64 26 28.6 71 33.2 65-74 26 28.6 53 24.8 75-84 14 15.4 25 11.7 85+ 4 4.4 2.9 Total 91. 214. Note: records where either age or gender were not recorded or inadequately described are excluded from the table. PCOC Patient and Carer National Survey 1 Page 9 of 18
Cultural Background All respondents (n=348) addressed the question relating to ethnicity. Of these 38 (11%) identified themselves as being from a particular ethnic origin or cultural background. Two carers identified themselves as being of Aboriginal or Torres Strait Island origin. Responses to Questions For questions 1 through 17, carers were asked to tick one of five options on a Likert-type scale as a measure of their satisfaction with the palliative care services received by the patient. The options were Very satisfied, Satisfied, Neither satisfied or dissatisfied, Dissatisfied, and Very dissatisfied. Carers could also tick a box if the question was Not relevant to my situation. PCOC Patient and Carer National Survey 1 Page 1 of 18
Question 1 - The patients comfort Question 2 - The way in which the patient s condition and likely progress have been explained by the palliative care team 8 8 6 185 13 6 166 13 13 6 3 Very satisfied Satisfied Neither Dissatisfied Not relevant Very satisfied 19 Satisfied Neither Dissatisfied Very dissatisfied 12 2 5 Not relevant Question 3 - Information given about side effects of treatment Question 4 - The way in which the palliative care team respects the patient s dignity 8 8 254 6 124 131 Very satisfied 37 8 1 Satisfied Neither Dissatisfied Very dissatisfied 26 Not relevant 6 75 5 Very satisfied Satisfied Neither Dissatisfied Very dissatisfied 1 1 PCOC Patient and Carer National Survey 1 Page 11 of 18
Question 5 - Meetings with the palliative care team to discuss the patient s condition and plan of care Question 6 - Speed with which symptoms are treated 8 8 6 167 11 6 17 126 Very satisfied 27 6 3 Satisfied Neither Dissatisfied Very dissatisfied 14 Not relevant 16 12 9 Very satisfied Satisfied Neither Dissatisfied Not relevant Question 7 - Palliative care team s attention to the patient s description of symptoms Question 8 - The way in which the patient s physical needs for comfort are met 8 8 6 197 18 6 3 14 Very satisfied 16 4 1 8 Satisfied Neither Dissatisfied Very dissatisfied Not relevant 13 2 9 Very satisfied Satisfied Neither Dissatisfied Not relevant PCOC Patient and Carer National Survey 1 Page 12 of 18
Question 9 - Availability of the palliative care team to the family Question 1 - Emotional support provided to family members by the palliative care team 8 8 6 188 114 6 149 111 Very satisfied 21 Satisfied Neither Dissatisfied Very dissatisfied 3 2 7 Not relevant Very satisfied 25 Satisfied Neither Dissatisfied Very dissatisfied 8 1 27 Not relevant Question 11 - The practical assistance provided by the palliative care team (eg. bathing, home care, respite) Question 12 - The doctor s attention to the patient s symptoms 8 8 6 137 73 81 6 4 17 Very satisfied Satisfied Neither Very dissatisfied 21 1 Not relevant 13 5 9 Very satisfied Satisfied Neither Dissatisfied Not relevant PCOC Patient and Carer National Survey 1 Page 13 of 18
Question 13 - The way the family is included in treatment and care decisions Question 14 - Information given about how to manage the patient s symptoms (eg. pain, constipation) 8 8 6 169 118 6 161 113 Very satisfied 14 8 1 Satisfied Neither Dissatisfied Very dissatisfied 21 Not relevant 29 8 16 Very satisfied Satisfied Neither Dissatisfied Not relevant Question 15 - How effectively the palliative care team manages the patient s symptoms Question 16 - The palliative care team s response to changes in the patient s care needs 8 8 6 171 117 6 167 118 18 3 Very satisfied Satisfied Neither Dissatisfied Not relevant Very satisfied 1 1 Satisfied Neither Dissatisfied Very dissatisfied 16 Not relevant PCOC Patient and Carer National Survey 1 Page 14 of 18
Question 17 - Emotional support provided to the patient by the palliative care team 8 6 169 119 Very satisfied 12 Satisfied Neither Dissatisfied Very dissatisfied 4 1 21 Not relevant PCOC Patient and Carer National Survey 1 Page 15 of 18
Have you had someone to help you with practical tasks? Thirty six percent of carers did not need help with practical tasks. Of those that needed help, 73% felt that they had all the help that they needed while 27% had either no help or not enough help with practical tasks. Table 14 Practical tasks? Yes, I ve had all the help I need 158 46.8 Yes, but not enough 22 6.5 I haven t needed help 121 35.8 No 37 11. Total 338. Not stated/inadequately described 1 Did anyone give you information on whether you would qualify for a Carer Payment or Allowance? Approximately 86% of carers needed financial help. Of these, only 66% were given all of the information they needed about the carer payment or allowance. Just under one quarter (23%) were not given any information while a further 11% were not given full information. Table 15 Carer Payment or Allowance? Yes, I was given all the information I need 19 56.9 Yes, it was mentioned but not in any detail 3 9. I haven t needed any financial help 48 14.4 No 66 19.8 Total 334. Not stated/inadequately described 14 PCOC Patient and Carer National Survey 1 Page 16 of 18
Did someone give you information about available support services? Only 15% of carers did not need support services. Of those that did, 69% were given all the information they needed, with 11% reporting that that they were given no information and % reporting that they did not receive enough information. Table 16 Support services? Yes, I was given all the information I need 197 58.6 Yes, it was mentioned but not in any detail 57 17. I haven t needed any help 49 14.6 No 33 9.8 Total 336. Not stated/inadequately described 12 Did someone give you practical training in lifting, managing medicine or other tasks? Forty three percent of carers did not need any help with lifting, managing medicine or other caring tasks. Of those who did, only % were given all the training they felt they needed, with 5% reporting that they received no training and 1% reporting that the training they received was inadequate. Table 17 Did someone give you practical training in lifting, managing medicine or other tasks? Yes, I was given all the training I need 77 22.9 Yes, I was given a bit, but not enough 19 5.7 I haven t needed any help 143 42.6 No 97 28.9 Total 336. Not stated/inadequately described 12 PCOC Patient and Carer National Survey 1 Page 17 of 18
Acknowledgements Contributions PCOC wishes to acknowledge the valuable contribution made by: The many staff from palliative care services who have spent considerable time collecting, collating and correcting the data and without whose effort this report would not be possible The PCOC staff at the Centre for Health Service Development, University of Wollongong, for the analysis and reporting of the data The PCOC Quality Improvement Facilitators for working closely with services to support the data collection and data quality improvement processes The Australian Government Department of Health and Ageing for their funding of this initiative Disclaimer PCOC has made every effort to ensure that the data used in this report are accurate. We would advise readers to use their professional judgement in considering all information contained in this report. Copyright This work is copyright. It may be produced in whole or in part for study or training purposes subject to the inclusion of an acknowledgement of the source. It is not for commercial usage or sale. Reproduction for purposes other than those above requires the written permission of PCOC. PCOC Patient and Carer National Survey 1 Page 18 of 18