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Appointments included respiratory specialist consultations, GP visits and pulmonary function tests, and pulmonary rehabilitation classes. Some participants had arranged for community nurses and doctors to visit their homes regularly, usually through their specialist. Participants often used a diary, calendar, or spreadsheet or received a phone message from the clinic or from their carer to remind them about their appointments. Common reasons for participants not attending appointments were illness or a family member or carer being unavailable to attend with them in those who relied on such support.

Many were driven to their medical appointments by a carer, family member, or friend. A small number drove themselves, had access to a community bus that provided oxygen, or used other public transport, but the bus was not always available, and would sometimes involve long waiting times. Travel distance could be vast. To see a specialist, one participant drove over 3 hours and stayed in a local motel, and another living in a rural setting took an interstate flight. Participants experienced taxis not showing up for short trips that were difficult to walk, and some had safety concerns about catching trains.

Half of the interviewees had experienced at least one issue with individual health care providers. Some perceived certain GPs or specialist medical professionals as conceited, uncaring, mostly concerned with money, or not listening to what they had to say:. Some participants described arriving late to their appointment due to ill-health, which occasionally angered their health care providers. Participants usually visited their GP for medication prescriptions, as well as for COPD exacerbations, and GPs were usually located close to their home.

Participants preferred seeing the same individual, and valued GPs who they perceived listened to what they had to say, were honest, or explained things simply. Walking from hospital parking to clinics was difficult for many, and some used mobility aids or wheelchairs assisted by family or carers:. Participants sometimes had to wait months for a respiratory specialist appointment in the public system, and could not afford to miss an appointment, as a rescheduled appointment could often be months later.

One participant attending a medical center preferred to risk seeing a doctor she did not like if it meant waiting time was reduced. Another participant moved house to be closer to specialist care. Participants did not like going to hospital and tried to avoid it. Reasons included unsanitary conditions, ducted air conditioning worsening COPD symptoms, worrying about responsibilities at home, a preference for staying at home, and poor information sharing between doctors. One participant was upset because she could not take her medications as frequently as she would have liked while in hospital, leading to confrontations with hospital staff.

Participants were prescribed an average of three to four medications for their COPD see Table 1 , and all participants believed they were very compliant with their medications. Most said that they knew when to take their medications without any help or organization system, and rarely forgot. Some participants would occasionally not take their medication.

Reasons included a lack of time, as medications were time-consuming; forgetting to take medications, or forgetting to ask the doctor for a script; not taking their medication or nebulizer with them while traveling; and lack of motivation. Some participants chose not to travel to facilitate adherence with their medications. Some participants mentioned relying on carers, doctors, and nurses for reminding them about renewal of scripts and organizing and administering medication, and this was perceived by patients as an effective strategy.

Some interviewees experienced side effects from their COPD medications. Oral corticosteroid side effects included restlessness, difficulty sleeping, hunger, weight gain, bruising, excessive sweating, worsening of osteoporosis, and corticosteroid-induced diabetes. Participants feared interactions when taking multiple medications, and felt irritated by time-consuming nebulizer use. A quarter of participants described taking their medications despite feeling that the medications were not working, often leading to feelings of frustration.

A reduction in number of medications was valued:. Now, it [a reduction in the number of medications from three to one] frees me up to do what I want. Despite almost all participants claiming to have no difficulty learning about their COPD or its care and never having been confused by medical information given to them, when asked specific questions, around half revealed difficulties.

The most patients could say about their COPD was that it was a condition caused by smoking, their lungs were affected, and it affected their breathing. Participants described confusion and barriers to understanding information given to them by medical professionals, due to jargon, lengthy information, and an inability to focus, due to their illness. Patients felt that they were not given adequate information about the use of medications, and often had poor understanding or erroneous beliefs about medications:.

1. Introduction

Participants who used oxygen devices felt it relieved breathlessness. However, poor portability was a common issue, as well as hygiene and noise. One participant returned his oxygen machine after seeing no change in his oxygen concentration using it. Some participants who mentioned using a nebulizer complained about the time burden associated with using it. The most common method of health monitoring used by interviewees was observing their day-to-day symptoms, such as sputum color and breathlessness.

The few participants who used a peak-flow or pulse-oximetry device expressed feelings of frustration and regret about smoking when their measurements were low. Some participants had access to a medical device but did not use it, and some had their carers, doctors, or community nurses monitor their health for them, mainly by measuring vital signs such as blood pressure, breathing rate, and oxygen levels.

Others were unaware of methods of monitoring. Few complementary therapies for COPD were mentioned by a small number of interviewees. These included inhalation or vaporization of eucalyptus oil and singing to improve breathing and meditation control of breathing. Half of the interviewees had some difficulty paying for their COPD care. For example, some had difficulty paying for medication, unsubsidized oxygen devices, or parking at the hospital for medical appointments. Specialist appointments were mostly affordable, but some described difficulties: Cassandra 52 years could not afford the fees of the specialist she was first referred to, and waited several months to see a less expensive doctor.

The 14 participants who received a disability pension found it adequate combined with government subsidization and careful budgeting. Participants often relied on informal carers, most commonly family and friends, to assist them with completing medical tasks.

Lung Compliance and Chronic Obstructive Pulmonary Disease

Interviewees described conflict with their carers when carers worried they were overexerting themselves, because interviewees felt the concern was unnecessary:. Furthermore, participants often felt guilty about requiring help from their carer, and considered themselves burdensome. A small number of interviewees felt that they could manage their COPD completely independently:. Participants described negative emotions, such as guilt and frustration, when they had to accept help from others for things that they believed they could do themselves:. Common barriers to self-care include many of the issues described previously, such as travel to and from appointments, waiting in clinic waiting rooms, taking medication, and learning from medical information.

Patients often reported frustration in response to the time-consuming nature of the demands of their COPD care:.

It really frustrates me. Most participants described having felt anxiety, fear, or frustration on at least one occasion because of their COPD treatment.

Patient-perceived treatment burden of chronic obstructive pulmonary disease

Breathlessness during exercise often left participants feeling fearful and worried. Some participants were anxious about leaving home without oxygen or about taking too many medications. Patients often felt frustrated or angered by the considerable burden of completing medical tasks:. They just make me angry, because I have to do them. Common methods interviewees used to improve their mood included talking to people about their problems, distraction eg, watching television, walking, eating , or meditation. Some participants described not being able to complete social activities, such as seeing friends or family, because of their treatments.

The most common barrier to social activities was not having a portable oxygen machine:. Other reasons included exhaustion after a day of medical tasks, the time burden associated with preparing to go out, and some participants did not like taking medications with them when they went out. When they were able to socialize, patients faced considerable emotional challenges, such as feelings of embarrassment or isolation due to COPD symptoms or treatment use. Gwyneth 61 years described her embarrassment when friends questioned her about her breathlessness while on a cruise:. I get embarrassed. This study has described the considerable patient-perceived treatment burden of COPD.

A number of major treatment-implementation barriers were identified, such as difficulty effecting health-behavior change, reliance on sometimes-unavailable carers or family members for completing medical tasks, difficulty affording treatment, and difficulty learning about COPD and how to care for it. In addition, patients reported loss of personal time consumed by taking medications or going to medical appointments and experience of medication side effects; these caused emotional distress, and could sometimes hinder treatment implementation.

Participants struggled with health behaviors, such as smoking cessation, where stress, anxiety, and being around others who smoked made quitting more difficult.

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It was common for participants to continue smoking even after their COPD diagnosis. Participants found exercising a challenge. While the majority of participants believed exercise was good for them, and most performed some form of daily exercise, often exercise only involved walking around the house. Canadian orders are shipped from Canada.

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Stock Image. Published by Hodder Arnold Publication, Used Condition: Very Good Hardcover. Save for Later. COPD is a systemic disease in which different factors determine its prognosis such as physical exercise intolerance associated with limitations of the ventilatory system and gas exchange and dysfunction of the peripheral skeletal musculature of the UL and LL. In accordance with the reference values described by Mathiowetz et al. This observation was likely due to the predominant use of the UL in the performance of ADL and the large number of scapular muscles responsible for the elevation of the UL, which concomitantly participate in respiratory movements during forced respiration.

The performance of ADL is important for the maintenance of the muscular strength of these limbs 30,31 by reducing impairment of the peripheral musculature as a consequence of disuse.

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With regard to peripheral muscle impairment, some authors state that there is a relationship between low BMI and such impairment, with a consequent reduction of exercise capacity in patients with COPD. Muscular limitations that functionally incapacitate the performance of the proposed ADL and the LL tests were not verified.

In the current study, the BODE Index for patients with COPD presented a maximum of 4 points in the total score due to impaired pulmonary function and a lower tolerance for physical exercise. The score of 4 observed in our COPD population classified them as low mortality risk, in support of our other results presented herein.

chronic obstructive pulmonary disease 2ed arnold publication Manual

Having demonstrated a correlation of the predictor of severity with functional performance in both the LL and UL tests as carried out for the performance of ADL by patients with COPD suggests that these tests are also good predictors of the functional assessment when related to the BODE Index, corroborating Ozalevli et al.

It is important to note that the difficulties and limitations encountered in our study were related to the choice of activities evaluated, the execution time of each activity, the predominance of patients with moderate obstruction, and the metabolic system utilized, without a telemetry system, all reflecting the need to review whether the methods employed were the best form of evaluation and suggesting further studies on this topic.

In conclusion, this study does not support the hypothesis that there is a correlation between the BODE Index and ventilatory and metabolic responses during the performance of ADL. However, we did not assess whether these results hold true for patients with a mild obstruction. Effect of reduced body weight on muscle aerobic capacity in patients with COPD.

Muscle strength, symptom intensity and exercise capacity in patients with cardiorespiratory disorders. Non-volitional assessment of skeletal muscle strength in patients with chronic obstructive pulmonary disease. Metabolic and ventilatory parameters of four activities of daily living accomplished with arms in COPD. Wouters EFM.

Nutrition and metabolism in COPD. Orozco-Levi M. Eur Respir J. Factors contributing to alterations in skeletal muscle and plasma amino acid profile in patients with chronic obstructive pulmonary disease. Am J Clin Nutr. The body-mass index, airflow obstruction, dyspnea, and exercise capacity index in chronic obstructive pulmonary disease. N Engl J Med. Comparison of hallway and a treadmill six-minute walk tests.

Comparison of sit-to-stand test with 6 min walk test in patients with chronic obstructive pulmonary disease. Respir Med. Acta Fisiatr. Velloso M, Jardim JR. J Bras Pneumol. Celli BR.

The clinical use of upper extremity exercise. Clin Chest Med. The 6-min walk test. A quick measure of functional status in elderly adults. Rabe KF et al. A physical activity questionnaire for the elderly. Med Sci Sports Exerc. Estatuto do Idoso.