In the present study, pain experienced by patients undergoing Renal Replacement Therapy is considered to be the dependent variable, as it can be influenced by gender, age and type of renal replacement therapy and time on dialysis, the independent variables.
damaging his/her self-esteem even further. The majority of dialysis patients in Greece are offered the opportunity of pension due to illness, when dialysis is initiated. In conlusion, physical dimension is affected extensively by Chronic Kidney Disease. Sings and symptoms of the disease, such as nausea, vomiting, shortness of breath, muscle cramps and fatigue, affect daily activities, even prior to dialysis initiation. Diet, walking and working ability, everyday activites and social life are affected by the disease according to its stage and treatment modality.
Patients with renal problems need intergrated therapeutic interventions, such as health and social care and support, in order to achieve a positive outcome maintaining a good quality of life during the course of the disease (De Oreo 2001). A holistic approach, within the multidisciplinary health-care team, presupposes the biopsychosocial understanding of pain. In other words, pain is regarded as a biological, psychological and social phenomenon.
Patients’ perception of their own health has been acknowledged as an important quality indicator and this should be taken into account during evaluation of the care provided (Morsch et al. 2006).
Among the goals for nephrology healthcare team is to provide optimal patient care and to maximise patient quality of life (Mazairac et al. 2011). However, patients’ perception of quality of life sometimes is different than that of clinicians. For the first, it evolves being able to perform daily activities without any symptoms and/or pain and being able to participate in social life; for the later, it means good clinical indicators and, in the case of HD or PD, sufficient dialysis adequacy (Hines et al. 2001, Nissenson 2014). Unfortunately, many researchers have suggested that Chronic Kidney Disease patients’ quality of life is lower than of the general age-, race-, and sex-matched populations (Evans et al. 1985, Valderrabano et al. 2001, Kimmel et al. 2003, Patel & Kimmel 2005, Unruh et al. 2005, Kontodimopoulos et al.
2009, Chow & Yong 2010, Soni et al. 2010, Mazairac et al. 2011, Kimmel 2013). It seems clear, from the literature review, that renal transplant patients have better Health-Related Quality of Life than haemodialysis patients even though the amount of medication and diet restrictions could be equal to pre-transplantation (Evans et al. 1985, Simmons et al. 1990, Liem et al. 2008). Furthermore, older dialysis patients usually present lower scores regarding quality of life, especially regarding physical problems (Morch et al. 2006) and females have been, also, described to have lower scores in various QoL tests compared to men (Valderrabano et al. 2001).
In conclusion, there is a growing body of recent literature that suggests that quality of life is summarising people’s subjective experiences regarding health and disease and is affected greatly by pain and painfull situations.
9 Purpose of the study
The general purpose of the study was to evaluate the personal perception of pain in Greek patients undergoing Renal Replacement Therapy and to explore the methods of pain self-management.
The research questions set for this study were determined in order to:
1. explore renal patients’ self-rated pain levels and prevalence of pain
2. assess how common the use of pain self-management is among renal patients and which types of pain self-management are most commonly used,
3. decide on which factors, such as gender, age, type and duration of Renal Peplacement Therapy, are associated with pain perception and the use of pain self-management among them.
4. evaluate the appropriateness of the research tools choosen.
The questions that have risen are do renal patients believe that they are in pain, in which body areas and when this pain occurs and, finally, how they try, on their own, to relieve their symptoms and pain. The research is aiming at developing easy to use pain management approaches in clinical practice.
9.1 HYPOTHESIS
Hypothesis is the logical speculation about the relationship between two or more variables and it is expressed as a research statement (Sekaran 2003). In the present study, it is hypothesised that renal patients experience some kind of pain during the course of Renal Replacement Therapy and that they take actions to manage it.
The null hypothesis (H0) attempts to prove than no variation exists between variables. In this study the H0 is considered to be that renal patients experience pain regardless of age, gender and type of Renal Replacement Therapy.
The alternative hypothesis (H1 or Ha) is the fact or statement that is attempted to be demonstrated in an indirect way by the use of hypothesis test. In the present study the H1 is considered to be that pain perception/experience is affected by age, gender and/or type of Renal Replacement Therapy and time on dialysis. If the null hypothesis is rejected, then the alternative hypothesis is accepted.
9.2 VARIABLES
In the present study, pain experienced by patients undergoing Renal Replacement Therapy is considered to be the dependent variable, as it can be influenced by gender, age and type of renal replacement therapy and time on dialysis, the independent variables.
10 Methods
10.1 STUDY DESING AND SETTINGS
A quantitative cross-sectional study design with a summative approach to qualitative analysis was conducted for 13 months (November 2010 to December 2011) in the five state renal units (Hemodialysis and Peritoneal Dialysis) in Thessaloniki, the second biggest city of Greece with a population of one million inhabitants (Figure 5).
The Dialysis Units belonged in the city’s state hospitals 2nd IKA, IPPOKRATEIO, AHEPA, PAPAGEORGIOU and PAPANIKOLAOU (Figure 6). These hospitals represent the 62.5% of the city’s public hospitals, 5.6% of Greece’s public Dialysis Units and the 3.06% of the total Dialysis Units established in the country. The sample distribution was 2nd IKA hospital 117 patients (75 HD and 42 PD), IPPOKRATEIO hospital 156 patients (120 HD and 36 PD), AHEPA hospital 190 patients (140 HD and 50 PD), PAPAGEORGIOU hospital 300 patients (240 HD and 60 PD) and PAPANIKOLAOU hospital 140 patients (100 HD and 40 PD). It was decided not to include in the study private dialysis units as they only provided haemodialysis and no peritoneal dialysis units were available. Furthermore, private units provide care to fewer patients than public hospitals and mainly older with more comorbidities.
Figure 5. Map of Greece (Thessaloniki is presented in circle).
10.2 STUDY POPULATION AND SAMPLES
All adult patients undergoing RRT in the five state renal units (HD and PD) in Thessaloniki, Greece, from November 2010 to December 2011 were approached (n=903) accounting for half of Thessalonikis’ dialysis population. Two thirds of the Dialysis patients agreed to participate and were interviewed (response rate 77.5%, n=700) (Table 4).
Patients were included in the study if they were on Renal Replacement Therapy (RRT) for more than six months, aged over 18 years old and able to understand and speak Greek in order to actively participate in the interview. Patients confused or in a coma, with hearing or reading problems, or under medications that affect judgment or mental state were excluded from the study (n=27).
The sample distribution among hospitals is presented in Table 4. In summary, the response rate ranged between 75% (n=117) (IPPOKRATEIO hospital) to 81.4% (n=114) (PAPANIKOLAOU hospital). Of the total patients approached to participate in the study (n=903), the 77.5% (n=700) signed the informed consent form and were interviewed during the study. The number of patients finally interviewed accounts for the 48.3% of the total population (n=1450 persons) undergoing Renal Replacement Therapy in public and private Dialysis Units in Thessaloniki, Greece at the time of the study.
Figure 6. Map of Thessaloniki with hospitals marked (1=IKA, 2=IPPOKRATEIO, 3=AHEPA, 4=PAPAGEORGIOU, 5=PAPANKIKOLAOU).
10 Methods
10.1 STUDY DESING AND SETTINGS
A quantitative cross-sectional study design with a summative approach to qualitative analysis was conducted for 13 months (November 2010 to December 2011) in the five state renal units (Hemodialysis and Peritoneal Dialysis) in Thessaloniki, the second biggest city of Greece with a population of one million inhabitants (Figure 5).
The Dialysis Units belonged in the city’s state hospitals 2nd IKA, IPPOKRATEIO, AHEPA, PAPAGEORGIOU and PAPANIKOLAOU (Figure 6). These hospitals represent the 62.5% of the city’s public hospitals, 5.6% of Greece’s public Dialysis Units and the 3.06% of the total Dialysis Units established in the country. The sample distribution was 2nd IKA hospital 117 patients (75 HD and 42 PD), IPPOKRATEIO hospital 156 patients (120 HD and 36 PD), AHEPA hospital 190 patients (140 HD and 50 PD), PAPAGEORGIOU hospital 300 patients (240 HD and 60 PD) and PAPANIKOLAOU hospital 140 patients (100 HD and 40 PD). It was decided not to include in the study private dialysis units as they only provided haemodialysis and no peritoneal dialysis units were available. Furthermore, private units provide care to fewer patients than public hospitals and mainly older with more comorbidities.
Figure 5. Map of Greece (Thessaloniki is presented in circle).
10.2 STUDY POPULATION AND SAMPLES
All adult patients undergoing RRT in the five state renal units (HD and PD) in Thessaloniki, Greece, from November 2010 to December 2011 were approached (n=903) accounting for half of Thessalonikis’ dialysis population. Two thirds of the Dialysis patients agreed to participate and were interviewed (response rate 77.5%, n=700) (Table 4).
Patients were included in the study if they were on Renal Replacement Therapy (RRT) for more than six months, aged over 18 years old and able to understand and speak Greek in order to actively participate in the interview. Patients confused or in a coma, with hearing or reading problems, or under medications that affect judgment or mental state were excluded from the study (n=27).
The sample distribution among hospitals is presented in Table 4. In summary, the response rate ranged between 75% (n=117) (IPPOKRATEIO hospital) to 81.4% (n=114) (PAPANIKOLAOU hospital). Of the total patients approached to participate in the study (n=903), the 77.5% (n=700) signed the informed consent form and were interviewed during the study. The number of patients finally interviewed accounts for the 48.3% of the total population (n=1450 persons) undergoing Renal Replacement Therapy in public and private Dialysis Units in Thessaloniki, Greece at the time of the study.
Figure 6. Map of Thessaloniki with hospitals marked (1=IKA, 2=IPPOKRATEIO, 3=AHEPA, 4=PAPAGEORGIOU, 5=PAPANKIKOLAOU).
10.3 RESEARCH TOOLS
In the literature several pain assessment tools have been used to measure pain in dialysis population (look at section 7.2 and Table 3). The Brief Pain Inventory (BPI) (Golan et al. 2009, Gamondi et al. 2013), the McGill Pain Questionnaire (MPQ) (Binik et al. 1982, Davison 2003, Masajtis-Zagajewska et al. 2011, Harris et al. 2012), the Pain Management Index (PMI) (Davison 2003, Barkzoy & Moss 2006) and the Edmonton Symptom Assessment System (ESAS) (Davison et al. 2006) were the most popular. In the present study three research instruments were used in order to have a more accurate and detailed assessment of pain levels. It was decided to start with two very easy to understand and fill in pain questionnaires (Wong-Baker FACES Pain Rating Scale and Visual Analogue Scale) and then proceed to a more detailed and time consuming one (short form of the McGill Pain Questionnaire).
The first research instrument was Wong-Baker FACES Pain Rating Scale (Wong & Baker, 1995), a scale consisting of six figures ranging from no pain (smiley face) to extreme pain (crying face) (Appendix, Figure 1). This scale was initially used with children, but it can be used with adults also (Stuppy 1998). It has been translated into many languages, included Greek (Wong-Baker FACES Foundation 2015). During the interview the scale was presented in a paper form and patients were asked to identify the face representing his/her present pain condition.
Secondly, a Visual Analogue Scale (VAS) (Aitken 1969), ranging from none to extreme pain, was presented by the interviewer in order to measure the amount of pain felt at the
Table 4. Sample distribution and Response Rate (RR) of renal patients/interviewed patients (n=700) (HD=Haemodialysis, PD=Peritoneal Dialysis).
Setting % of total RR within wards (%) N RR within hospital (%) IKA Hospital 76.9
HD 10.6 98.7 (n=74) 75 PD 2.3 38.1 (n=16) 42
IPPOKRATEIO Hospital 75 HD 14.4 84.2 (n=101) 120
PD 2.3 44.5 (n=16) 36
AHEPA Hospital 81.1 HD 18.0 90 (n=126) 140
PD 4.0 56 (n=28) 50
PAPAGEORGIOU Hospital 75 HD 27.7 80.8 (n=194) 240
PD 4.4 51.7 (n=31) 60
PAPANIKOLAOU Hospital 81.4 HD 12.1 85 (n=85) 100
PD 4.1 72.5 (n=29) 40
TOTAL 100,0 100,0 (n=700) 903 77.5
moment of the interview. Operationally a VAS is a horizontal or vertical line, 100mm in length, anchored by word description at each end (no pain on the left hand or bottom end and very severe pain on the right hand or top end) (Appendix, Figure 2). Dialysis patients were asked to mark on the printed line the point that represented their current perception of pain. The VAS score was determined by measuring in millimeters from the left hand end of the line (as the horizontal line was used) to the point that the patient marked.
Finally, the McGill Pain Questionnaire (short form) (Melzack 1987) was also used in order to assess the patients’ pain experience over the last week. It includes a body outline drawing for assessment of pain location and a list of pain descriptions. The questionnaire contained 78 pain descriptor items categorized in 20 subgroups, containing 2-6 words each and describing pain which represent four major dimensions of quality of pain: sensory (items 1-10), affective (11-15), evaluative (16), and miscellaneous (17-20) which comprise the Pain Rating Index (PRI). It also includes an 1-item pain intensity scale (30) and a 6-point Present Pain Intensity (PPI) scale (31) (ranging from none-0- to excruciating-5-) (Melzack & Torgerson 1971, Hawker et al. 2011) (Appendix, Figure 3 and 4). The questionnaire has been translated and validated into Greek earlier by Georgoudis et al. (2000) and Mystakidou et al. (2001).
An open-ended question regarding self-management of pain was added at the end after the analysis of the pilot study. The question, stated in Greek, asked patients to describe if they used any type of pain self-managing method (“When in pain, do you use any kind of pain relieving method or regime? Could you please describe in your own words what you choose to do”).
No examples of managing methods were given so that patients were not led to any kind of answer.
In order to better assess pain levels and the relationship between the various study variables the Serlin et al. (1995) classification of pain severity was used. According to this, a rating of 0-4 corresponds to no or mild pain, 5-6 corresponds to moderate pain and 7-10 to severe pain.
10.4 DATA COLLECTION
Data were collected by face to face structured interviews during HD or PD session over a period of one year. During structured interviews the same information was gathered from all participants in the exact sequence. Individuals chose from predesigned response options and closed-ended questions. The purpose of such questions was to ensure comparability of the responses and to better facilitate data analysis (Gray 2004, Polit & Beck 2010). The main researcher had a 15 years renal experience and was acquintant with the procedures and protocols of the Dialysis Units. She has been employed in a big nephrology clinic and has provided care for renal patients during their hospitalisation prior to commencing RRT, during HD and PD, and during end-of-life period. It was decided by the research team to conduct the pilot study in the main researcher’s workplace (convenient sample). Data were collected on her days off or after/prior to her shifts and with her civilian clothes (no uniform).
The setting of the interview, the Dialysis Unit, was chosen in order for the patients to feel more comfortable and familiar with the environment. The researcher, having obtained the permission of each hospital’s ethics committee, provided a verbal explanation of the study and also a copy of the participant’s information and consent form. Patients were asked to read the information and complete the consent form; then a code was given to each one of them.
For having a better co-operation with the dialysis units, it was decided to have a first
“exploratory” visit and a second one for the actual interview. During the first visit, the researcher had a small meeting to acquaint with the director, the sister and/or the charge nurse of each healthcare setting. Afterwards she was introduced by the sister or the charge nurse to the patients and she had some small talk with those fulfilling the criteria of the study in order to get them to open up. On the second visit she started the interviews one by one.
This was quite time consuming because the patients in HD Units are usually divided in two
10.3 RESEARCH TOOLS
In the literature several pain assessment tools have been used to measure pain in dialysis population (look at section 7.2 and Table 3). The Brief Pain Inventory (BPI) (Golan et al. 2009, Gamondi et al. 2013), the McGill Pain Questionnaire (MPQ) (Binik et al. 1982, Davison 2003, Masajtis-Zagajewska et al. 2011, Harris et al. 2012), the Pain Management Index (PMI) (Davison 2003, Barkzoy & Moss 2006) and the Edmonton Symptom Assessment System (ESAS) (Davison et al. 2006) were the most popular. In the present study three research instruments were used in order to have a more accurate and detailed assessment of pain levels. It was decided to start with two very easy to understand and fill in pain questionnaires (Wong-Baker FACES Pain Rating Scale and Visual Analogue Scale) and then proceed to a more detailed and time consuming one (short form of the McGill Pain Questionnaire).
The first research instrument was Wong-Baker FACES Pain Rating Scale (Wong & Baker, 1995), a scale consisting of six figures ranging from no pain (smiley face) to extreme pain (crying face) (Appendix, Figure 1). This scale was initially used with children, but it can be used with adults also (Stuppy 1998). It has been translated into many languages, included Greek (Wong-Baker FACES Foundation 2015). During the interview the scale was presented in a paper form and patients were asked to identify the face representing his/her present pain condition.
Secondly, a Visual Analogue Scale (VAS) (Aitken 1969), ranging from none to extreme pain, was presented by the interviewer in order to measure the amount of pain felt at the
Table 4. Sample distribution and Response Rate (RR) of renal patients/interviewed patients (n=700) (HD=Haemodialysis, PD=Peritoneal Dialysis).
Setting % of total RR within wards (%) N RR within hospital (%) IKA Hospital 76.9
HD 10.6 98.7 (n=74) 75 PD 2.3 38.1 (n=16) 42
IPPOKRATEIO Hospital 75 HD 14.4 84.2 (n=101) 120
PD 2.3 44.5 (n=16) 36
AHEPA Hospital 81.1 HD 18.0 90 (n=126) 140
PD 4.0 56 (n=28) 50
PAPAGEORGIOU Hospital 75 HD 27.7 80.8 (n=194) 240
PD 4.4 51.7 (n=31) 60
PAPANIKOLAOU Hospital 81.4 HD 12.1 85 (n=85) 100
PD 4.1 72.5 (n=29) 40
TOTAL 100,0 100,0 (n=700) 903 77.5
moment of the interview. Operationally a VAS is a horizontal or vertical line, 100mm in length, anchored by word description at each end (no pain on the left hand or bottom end and very severe pain on the right hand or top end) (Appendix, Figure 2). Dialysis patients were asked to mark on the printed line the point that represented their current perception of pain. The VAS score was determined by measuring in millimeters from the left hand end of the line (as the horizontal line was used) to the point that the patient marked.
Finally, the McGill Pain Questionnaire (short form) (Melzack 1987) was also used in order to assess the patients’ pain experience over the last week. It includes a body outline drawing for assessment of pain location and a list of pain descriptions. The questionnaire contained 78 pain descriptor items categorized in 20 subgroups, containing 2-6 words each and describing pain which represent four major dimensions of quality of pain: sensory (items 1-10), affective (11-15), evaluative (16), and miscellaneous (17-20) which comprise the Pain Rating Index (PRI). It also includes an 1-item pain intensity scale (30) and a 6-point Present Pain Intensity (PPI) scale (31) (ranging from none-0- to excruciating-5-) (Melzack & Torgerson 1971, Hawker et al. 2011) (Appendix, Figure 3 and 4). The questionnaire has been translated and validated into Greek earlier by Georgoudis et al. (2000) and Mystakidou et al. (2001).
An open-ended question regarding self-management of pain was added at the end after the analysis of the pilot study. The question, stated in Greek, asked patients to describe if they used any type of pain self-managing method (“When in pain, do you use any kind of pain relieving method or regime? Could you please describe in your own words what you choose to do”).
No examples of managing methods were given so that patients were not led to any kind of answer.
In order to better assess pain levels and the relationship between the various study variables the Serlin et al. (1995) classification of pain severity was used. According to this, a rating of 0-4 corresponds to no or mild pain, 5-6 corresponds to moderate pain and 7-10 to severe pain.
10.4 DATA COLLECTION
Data were collected by face to face structured interviews during HD or PD session over a period of one year. During structured interviews the same information was gathered from all participants in the exact sequence. Individuals chose from predesigned response options and closed-ended questions. The purpose of such questions was to ensure comparability of the responses and to better facilitate data analysis (Gray 2004, Polit & Beck 2010). The main researcher had a 15 years renal experience and was acquintant with the procedures and protocols of the Dialysis Units. She has been employed in a big nephrology clinic and has provided care for renal patients during their hospitalisation prior to commencing RRT,
Data were collected by face to face structured interviews during HD or PD session over a period of one year. During structured interviews the same information was gathered from all participants in the exact sequence. Individuals chose from predesigned response options and closed-ended questions. The purpose of such questions was to ensure comparability of the responses and to better facilitate data analysis (Gray 2004, Polit & Beck 2010). The main researcher had a 15 years renal experience and was acquintant with the procedures and protocols of the Dialysis Units. She has been employed in a big nephrology clinic and has provided care for renal patients during their hospitalisation prior to commencing RRT,